Selecting Patient-Reported Outcomes Measures: A Committee Update

December 2015

Kathryn Yorkston

With the movement toward patient-centered care, understanding the patient's values and perceptions has become an increasingly important part of the health care delivery process (Rao, 2015). Use of patient-reported outcome (PRO) measures is now a common practice in health care, and specifically in rehabilitation settings (de Riesthal & Ross, 2015). As the name suggests, PROs seek to obtain the patient's perspective on issues that cannot be directly observed such as pain or fatigue. Outcome measures also focus on issues of psychosocial function related to self-efficiency or satisfaction with social roles. PROs are not only important in giving a voice to people with communication problems but also because they will help us document the outcome of our treatment within the context of changing health care funding.

Rationale for PROs

The need for PRO measures is spurred by a number of factors:

  1. The health care reimbursement landscape will increasingly be one in which providers are called upon to submit measures related to patient experience. These outcome measures likely will be used to determine payment. Ideally, these measures will be applicable across multiple disabling conditions so that they can be limited in number.
  2. Rigorous PROs are becoming increasingly available, in part, because of the NIH initiative: Patient Reported Outcomes Measurement Information Systems (PROMIS). This initiative stresses standardized measures developed using Item Response Theory (IRT) which allow for precise measurement in conjunction with reduced response burden. Application of IRT to the field of speech-language pathology also has begun (Baylor et al., 2011).
  3. Widely accepted models of disablement provide definitions of constructs including a variety of psychosocial issues that can be best measured via patient self-report (World Health Organization, 2001).

Goals of the Ad Hoc Committee

In 2014, ASHA formed an Ad Hoc Committee to make recommendations for evaluating, selecting, and implementing PRO measures. The selection of instruments is guided by several general principles:

  • provide coverage of a broad range of outcomes including those related to language, speech, voice, and swallowing for adults in post-acute, chronic health care settings;
  • choose instruments of the highest psychometric rigor as well as those considered to be the best currently available;
  • ensure that the selection process reflects the dynamic nature of the field of measurement development and identifies well-developed scales, scales that are in the process of development but not currently in final form, and constructs that represent gaps in our ability to measure outcomes;
  • ensure that the selection of measures is updated regularly.

Identification of PRO Measures

ASHA staff conducted an initial broad search of published articles for PROs related to communication or swallowing. This search yielded nearly 100 measures. The committee reviewed and discussed this literature with a goal of creating a more specific set of inclusion/exclusion criteria that can serve as the initial screening mechanism.

Inclusion criteria included:

  • tools must be based on self-report of patients rather than solely on proxy ratings;
  • tools must be appropriate for adults with medical (e.g., neurologic or cancer-related) communication or swallowing disorders (either developmental or acquired) in the post-acute phase of rehabilitation;
  • target constructs must be clearly defined with an expectation of change with treatment;
  • a history of how items were developed must be available;
  • measures must adhere to rigorous psychometric standards.

Exclusion criteria included:

  • scales for which a specific communication- or swallowing-related score is unavailable, (e.g., a single item or subset of communication/swallowing items from a larger instrument that does not generate a separate communication/swallowing scale);
  • checklists or surveys that do not provide a summary score;
  • instruments that do not report information about their development and psychometric properties.

Evaluating the Quality of Measures

The task of the Ad Hoc Committee was to identify a framework within which current PRO measures could be evaluated. To accomplish this task, criteria were needed to identify the strengths and weaknesses of the PRO measures. The criteria cover both the theoretical model on which a given measure was based and its psychometric properties. After reviewing a number of approaches for evaluating the quality of PRO measures, the committee recommended a modified version of the tool: Evaluating the Measurement of Patient-Reported Outcomes (EMPRO) (Valderas et al., 2008) for this purpose. This tool covers eight key PRO areas

  1. conceptual and measurement model
  2. reliability
  3. validity
  4. responsiveness
  5. interpretability
  6. burden
  7. alternative modes of administration
  8. cross-cultural and linguistic adaptations

These areas closely align with the current guidelines reported in the literature regarding the minimum standards necessary to evaluate PROs. To obtain more complete and current information about the measures, authors of candidate instruments also will be asked to provide details about the development and psychometric properties of their instrument.

Future Directions

The long-term goal of this effort is to systematically identify and evaluate existing PRO measures related to communication and swallowing and to integrate these measures in the National Outcomes Measurement System (NOMS). This integration will benefit both clinicians and clinical researchers. The availability of psychometrically-sound PRO measures is not intended to replace traditional performance-based measures, but rather, PRO measures are anticipated to supplement and enrich our current clinical assessment capability. Such tools will provide clinicians with a clearer and more complete picture of the multiple consequences of communication and swallowing problems in adults with medical conditions. The adult population is the starting point for PROs. Certainly, PROs has potential applicability for children in school settings, where parents and/or teachers can serve as proxies reporting on student perspectives. Integration of PRO measures into the NOMS platform also will offer opportunities for a variety of clinical research projects. Programmatic study will contribute to the development of a research base for PROs that addresses key issues such as the use of proxy raters and the relationship between performance-based and patient-reported outcomes in various clinical populations.

About the Author

Kathryn Yorkston is chair of the Ad Hoc Committee on Patient-Reported Outcomes (PROs), professor and head of the Division of Speech Pathology in the Department of Rehabilitation Medicine at the University of Washington in Seattle.

The Ad Hoc Committee on Patient-Reported Outcomes consists of Kathryn Yorkston (Chair), William Hula, Carolyn Baylor, Gerasimos Fergadiotis, Joseph Murray, Nina Simmons-Mackie, David Tulsky, Howard Goldstein (Board of Directors Liaison), Margaret Rogers (ASHA), and Rob Mullen (Ex Officio).

References

Baylor, C., Hula, W., Donovan, N. J., Doyle, P. J., Kendall, D., & Yorkston, K. (2011). An introduction to i Item Response Theory and Rasch models for speech-language pathologists. American Journal of Speech-Language Pathology, 20, 243–259.

de Riesthal, M., & Ross, K. B. (2015). Patient reported outcome measures in neurologic communication disorders: An update. SIG 2 Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders, 25, 114–120. doi: 10.1044/nnsld25.3.114.

Rao, P. R. (2015). Outcomes and quality: Key characteristics of a successful SLP value journey. SIG 2 Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders, 25, 94–106. doi: 10.1044/nnsld25.3.94.

Valderas, J. M., Ferrer, M., Mendívil, J., Garin, O., Rajmil, L., Herdman, M., & Alonso, J. (2008). Development of EMPRO: a tool for the standardized assessment of patient‐reported outcome measures. Value in Health, 11, 700–708.

World Health Organization. (2001). International classification of functioning, disability and health (ICF). Geneva, Switzerland: Author.

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