Elsevier

The Journal of Pediatrics

Volume 230, March 2021, Pages 198-206.e2
The Journal of Pediatrics

Original Article
Considerations to Support Use of Patient-Reported Outcomes Measurement Information System Pediatric Measures in Ambulatory Clinics

https://doi.org/10.1016/j.jpeds.2020.11.053Get rights and content

Objective

To identify challenges to the use of Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric measures in the ambulatory pediatric setting and possible solutions to these challenges.

Study design

Eighteen semistructured telephone interviews of health system leaders, measurement implementers, and ambulatory pediatric clinicians were conducted. Five coders used applied thematic analysis to iteratively identify and refine themes in interview data.

Results

Most interviewees had roles in leadership or the implementation of patient-centered outcomes; 39% were clinicians. Some had experience using PROMIS clinically (44%) and 6% were considering this use. Analyses yielded 6 themes: (1) selection of PROMIS measures, (2) method of administration, (3) use of PROMIS Parent Proxy measures, (4) privacy and confidentiality of PROMIS responses, (5) interpretation of PROMIS scores, and (6) using PROMIS scores clinically. Within the themes, interviewees illuminated specific unique considerations for using PROMIS with children, including care transitions and privacy.

Conclusions

Real-world challenges continue to hamper PROMIS use. Ongoing efforts to disseminate information about the integration of PROMIS measures in clinical care is critical to impacting the health of children.

Section snippets

Methods

To understand the challenges, considerations, and potential solutions related to the use of PROMIS in the ambulatory pediatric setting, the project lead and 2 researchers conducted 18 semistructured telephone interviews of health system leaders, PROs implementers, and ambulatory pediatric clinicians with expertise or interest in implementing PROs or PROMIS measures in pediatric settings. Interviewees were recruited through a combination of literature review, PROMIS expert knowledge of

Results

The majority of interviewees were employed at academic medical institutions (83%) located across all regions of the US (28% in West, 28% in Midwest, 17% in Northeast, and 28% in South) (Table I; available at www.jpeds.com). Many interviewees were health systems leaders (56%); 72% had roles in implementing PROs and 39% were clinicians. Some interviewees had used PROMIS in pediatric clinical settings (44%), and another 28% had used PROMIS, but not within a pediatric clinical setting. Still others

Discussion

Our work identified 6 priority topics that clinicians and health systems may consider as they integrate PROMIS measures into ambulatory pediatric practice. The topics arose within both the early stages of implementation in clinical settings (eg, which measures to use and how to collect the data) and also during use within the clinical encounter (eg, how to interpret, discuss, and act on PROMIS results). Most identified challenges were not specifically related to the PROMIS metrics themselves

References (98)

  • C. Ford et al.

    Confidential health care for adolescents: position paper for the society for adolescent medicine

    J Adolesc Health

    (2004)
  • J.S. Lai et al.

    Patient Reported Outcomes Measurement Information System and Quality of Life in Neurological Disorders Measurement System to evaluate quality of life for children and adolescents with neurofibromatosis type 1 associated plexiform neurofibroma

    J Pediatr

    (2019)
  • P.A. Pilkonis et al.

    Validation of the depression item bank from the Patient-Reported Outcomes Measurement Information System (PROMIS) in a three-month observational study

    J Psychiatr Res

    (2014)
  • C.F. Snyder et al.

    Patient-reported outcomes (PROs): putting the patient perspective in patient-centered outcomes research

    Med Care

    (2013)
  • J.F. Baumhauer

    Patient-reported outcomes—are they living up to their potential?

    N Engl J Med

    (2017)
  • L.S. Rotenstein et al.

    Making patients and doctors happier - the potential of patient-reported outcomes

    N Engl J Med

    (2017)
  • T. Locklear et al.

    Patient-Reported Outcomes [Internet]. 2019 [updated 2019]

  • T. Luckett et al.

    Improving patient outcomes through the routine use of patient-reported data in cancer clinics: future directions

    Psychooncology

    (2009)
  • S. Marshall et al.

    Impact of patient-reported outcome measures on routine practice: a structured review

    J Eval Clin Pract

    (2006)
  • J.M. Valderas et al.

    The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature

    Qual Life Res

    (2008)
  • S.B. Detmar et al.

    Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial

    JAMA

    (2002)
  • M. Espallargues et al.

    Provision of feedback on perceived health status to health care professionals: a systematic review of its impact

    Med Care

    (2000)
  • J. Greenhalgh et al.

    The effectiveness of the use of patient-based measures of health in routine practice in improving the process and outcomes of patient care: a literature review

    J Eval Clin Pract

    (1999)
  • R.E. Jensen et al.

    The role of technical advances in the adoption and integration of patient-reported outcomes in clinical care

    Med Care

    (2015)
  • P. Franklin et al.

    Framework to guide the collection and use of patient-reported outcome measures in the learning healthcare system

    EGEMS (Wash DC)

    (2017)
  • J.E. Broderick et al.

    Advances in patient-reported outcomes: the NIH PROMIS measures

    EGEMS (Wash DC)

    (2013)
  • B.B. Reeve et al.

    Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS)

    Med Care

    (2007)
  • D.E. Irwin et al.

    Cognitive interviewing methodology in the development of a pediatric item bank: a patient reported outcomes measurement information system (PROMIS) study

    Health Qual Life Outcomes

    (2009)
  • D.E. Irwin et al.

    Development of six PROMIS pediatrics proxy-report item banks

    Health Qual Life Outcomes

    (2012)
  • E.K.H. Chan et al.

    Implementing patient-reported outcome measures in clinical practice: a companion guide to the ISOQOL user's guide

    Qual Life Res

    (2018)
  • J. Ali et al.

    Users' Guide to Integrating Patient-Reported Outcomes in Electronic Health Records [Internet]. Baltimore, MD: PCORI; 2017 [updated 2017]

  • N. Aaronson et al.

    User's guide to implementing patient-reported outcomes assessment in clinical practice, Version January 2015, International Society for Quality of Life Research; Milwaukee, WI

  • S.A. Schepers et al.

    Healthcare professionals' preferences and perceived barriers for routine assessment of patient-reported outcomes in pediatric oncology practice: moving toward international processes of change

    Pediatr Blood Cancer

    (2016)
  • S.A. Schepers et al.

    Real-world implementation of electronic patient-reported outcomes in outpatient pediatric cancer care

    Psychooncology

    (2017)
  • P.S. Hinds et al.

    PROMIS pediatric measures in pediatric oncology: valid and clinically feasible indicators of patient-reported outcomes

    Pediatr Blood Cancer

    (2013)
  • I. Porter et al.

    Framework and guidance for implementing patient-reported outcomes in clinical practice: evidence, challenges and opportunities

    J Comp Effect Res

    (2016)
  • J. Dawson et al.

    The routine use of patient reported outcome measures in healthcare settings

    BMC

    (2010)
  • D. Miller et al.

    Patient-centered care and patient-reported measures: let's look before we leap

    Patient

    (2015)
  • G. Guest et al.

    Applied thematic analysis

    (2012)
  • L.I. Wagner et al.

    Bringing PROMIS to practice: brief and precise symptom screening in ambulatory cancer care

    Cancer

    (2015)

  • HealthMeasures. Recommended HealthMeasures [Internet]. Evanston (IL): Northwestern University; 2020 [updated 2020]

  • J.A. Teresi et al.

    Measurement equivalence of the Patient Reported Outcomes Measurement Information System (PROMIS) Pain Interference short form items: application to ethnically diverse cancer and palliative care populations

    Psychol Test Assess Model

    (2016)

  • HealthMeasures. PROMIS Available Translations [Internet]. Evanston, IL: Northwestern University; 2020 [updated 2020]

  • K. Shofner

    What is Universal Spanish? [Internet]. United Language Group; 2020 [updated 2020]

  • S.M. Flanagan et al.

    An exploration of the data collection methods utilised with children, teenagers and young people (CTYPs)

    BMC Res Notes

    (2015)
  • M. Anderson et al.

    Social Media & Technology 2018

    (2018)

  • Research Electronic Data Capture (REDCap) [Internet]. 2020 [updated 2020]

  • Data Collection Tools: REDCap [Internet]. Evanston, IL: Northwestern University; 2020 [updated 2020]

  • J.B. Bjorner et al.

    Difference in method of administration did not significantly impact item response: an IRT-based analysis from the Patient-Reported Outcomes Measurement Information System (PROMIS) initiative

    Qual Life Res

    (2014)

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    Supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health under the Infrastructure and Opportunities Award (U19 AR069519 [to E.C. (PI)]). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The study sponsor had no role in the study's design, data collection, analysis or interpretation, nor writing or deciding to submit this manuscript for publication. The authors declare no conflicts of interest.

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