Key considerations to reduce or address respondent burden in patient-reported outcome (PRO) data collection

Aiyegbusi, Olalekan Lee; Roydhouse, Jessica; Rivera, Samantha Cruz; Kamudoni, Paul; Schache, Peter; Wilson, Roger; Stephens, Richard; Calvert, Melanie

doi:10.1038/s41467-022-33826-4

Cited by 65 publications

(39 citation statements)

References 93 publications

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“…The heterogeneity of injuries and challenge regarding what PRO measures to select from a myriad of tools (ie, whether to use general, anatomical region, or condition-specific PRO measures) and when to administer these instruments over the recovery trajectory after injury. 18 Respondent Burden and Survey Fatigue Both researchers and those in health systems engaged in PRO measurement have expressed concerns related to the burden faced by patients in completing multiple surveys, often in combination with other registration processes. Such responder burden or survey fatigue is the degree to which a respondent perceives their participation in a survey as difficult, time-consuming, or emotionally stressful and redundant.…”

Section: General Barriers To Surveying Trauma Populationsmentioning

confidence: 99%

“…Such responder burden or survey fatigue is the degree to which a respondent perceives their participation in a survey as difficult, time-consuming, or emotionally stressful and redundant. 18 Furthermore, the inability and physical difficulty in using electronic devices when completing questionnaires poses an additional challenge. Responder burden has been associated with low compliance rates around completing PRO measures and poor-quality data sets.…”

Section: General Barriers To Surveying Trauma Populationsmentioning

confidence: 99%

“…21 Symptoms of anxiety attenuate functional improvement during early stages of recovery, and symptoms of depression increase risk of postoperative pain, hospital readmission, and hospital length of stay. 18,22 The Patient-Reported Outcomes Measurement Information System (PROMIS ® ) provides a range of surveys for assessing mental and social health status, such as PROMIS Depression, PROMIS Anxiety, PROMIS Emotional Support, PROMIS Instrumental Support, and social health and social relationship subdomains of PROMIS measures. 23 Other fixed scale tools include the Patient Health Questionnaire (PHQ-2/-7), Generalized Anxiety Disorder (GAD-2/-7) Questionnaire, Beck Depression Inventory (BDI-II), and STAI (State-Trait Anxiety Inventory) that may uncover concerns regarding mindset, which could substantially affect recovery.…”

Section: Stigma Of Screening For Mental and Social Health In Patients...mentioning

confidence: 99%

“…17 In addition, over a quarter of respondents admitted to being constrained by costs related to collecting, scoring, and using PRO data in a readily accessible and presentable format within clinical settings in a timely fashion. 18 Notably, 66% of respondents were interested in incorporating PRO measures within their practice, where the technology infrastructure in their institutions was adequate for effective collection. Another barrier lies in establishing baseline scores after injury given recall bias around retrospective scoring and finding appropriate, standardized time points for measurement amid the range of nonsurgical and surgical pathways.…”

Section: Implementing Patient-reported Outcome Measures In Orthopaedi...mentioning

confidence: 99%

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Patient-Reported Outcome Measurement in Orthopaedic Trauma

Jayakumar

Heng

Okelana

et al. 2023

J Am Acad Orthop Surg

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Patient-reported outcome (PRO) measurements are validated tools developed to quantify self-reported aspects of capability, mindset, and circumstances in a standardized fashion. While PRO measurements have primarily been used in the research realm, a growing body of work now underscores substantial opportunities in applying the data generated by these tools to advance patient-centered musculoskeletal care. Specifically, the insights into a patient's health status derived from these measures can augment the standard biomedical approach to the management of patients with orthopaedic trauma. For instance, PRO measures have demonstrated the high prevalence of psychological distress and social concerns within trauma populations and shown that mindsets and circumstances account for a substantial amount of the variation in levels of symptom intensity and capability in these patients. Such findings support the need for a more integrated, biopsychosocial, and multidisciplinary team-based approach to orthopaedic trauma care that include both technical and nontechnical skillsets. In this chapter, we explore the range of available fixed-scale and computer adaptive PRO measures that can quantify aspects of capability, mindsets, and circumstances of the patient with orthopaedic trauma during their experience of injury, recovery, and rehabilitation. Furthermore, we define human, technical, and system-level challenges within the often complex, dynamic, and clinically intense trauma setting. Finally, we highlight potential opportunities through successfully implementing PRO measurements for clinical decision support, shared decision making, predicting health outcomes, and developing advanced care pathways for patients and populations with orthopaedic trauma.

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Section: General Barriers To Surveying Trauma Populationsmentioning

confidence: 99%

Section: General Barriers To Surveying Trauma Populationsmentioning

confidence: 99%

Section: Stigma Of Screening For Mental and Social Health In Patients...mentioning

confidence: 99%

Section: Implementing Patient-reported Outcome Measures In Orthopaedi...mentioning

confidence: 99%

See 2 more Smart Citations

Patient-Reported Outcome Measurement in Orthopaedic Trauma

Jayakumar

Heng

Okelana

et al. 2023

J Am Acad Orthop Surg

View full text Add to dashboard Cite

show abstract

“…Both IRT and CATs have allowed PROMs to be administered in a succinct fashion, in some cases with as little as 4 to 8 questions in a particular domain (eg, upper extremity function), while maintaining important psychometric rigor. 39 Efforts should be made by clinicians and researchers using PROMs to develop clearly defined goals/project objectives, evaluate the relevance and characteristics of a particular measurement tool, and optimize the mode of delivery to minimize respondent burden for patients. 38 Although the exact item number and length of a PROM may be variable depending on the pathology being evaluated, the minimum number of items necessary to appropriately evaluate the outcome of interest should be a primary goal during study development.…”

Section: Patient-reported Outcomes Measurement Information System Met...mentioning

confidence: 99%

Patient-Reported Outcome Measurement and Minimal Clinically Important Difference for Hand Surgeons

Garcia

Tyser

Roca

et al. 2023

J Am Acad Orthop Surg

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Patient-reported outcome measurement (PROM) tools are used to evaluate health status and response to treatment and have been integral in the effort to improve the quality of care provided. Patient reported outcomes (PROs) have garnered additional attention since becoming a priority of the National Institutes of Health in the early part of this century, and their use in both clinical practice and research has subsequently increased. In the upper extremity, a variety of PRO instruments exist that can assist physicians in their ability to track and/or prognosticate outcomes, make comparisons between treatments as well as strengthen research methodologies, and help determine the value of care. A more complete interpretation of the clinical significance of patient-reported outcome measurements is informed by parameters such as minimal clinically important difference, substantial clinical benefit and patient acceptable symptom state

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Incorporating patient‐reported outcome data into a predictive calculator for allogeneic hematopoietic cell transplantation recipients

Shaw,

Flynn,

et al. 2024

Cancer

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BackgroundThe Center for International Blood and Marrow Transplant Research (CIBMTR) provides a 1‐year overall survival calculator to estimate outcomes for individual patients before they undergo allogeneic hematopoietic cell transplantation (HCT) to inform risk. The calculator considers pre‐HCT clinical and demographic characteristics, but not patient‐reported outcomes (PROs). Because pre‐HCT PRO scores have been associated with post‐HCT outcomes, the authors hypothesized that adding PRO scores to the calculator would enhance its predictive power.MethodsClinical data were obtained from the CIBMTR and the Blood and Marrow Transplant Clinical Trials Network. The PRO measures used were the 36‐Item Short Form Survey (SF‐36) and the Functional Assessment of Cancer Therapy‐Bone Marrow Transplantation. One thousand thirty‐three adult patients were included.ResultsWhen adjusted for clinical characteristics, the SF‐36 physical component score was significantly predictive of 1‐year survival (hazard ratio [HR], 0.88; 95% confidence interval [CI], 0.81–0.95; p = .0015), whereas the mental component score was not (HR, 1.02; 95% CI, 0.95–1.10; p = 0.6396). The baseline single general health question on the SF‐36 was also significantly associated with mortality (HR, 1.91 for those reporting fair/poor health vs. good, very good, or excellent health; 95% CI, 1.33–2.76; p = .0005). The addition of PRO scores to the calculator did not result in a significant change in the model’s predictive ability. Self‐reported pre‐HCT scores were strongly predictive of self‐reported health status (odds ratio, 3.35; 95% CI, 1.66–6.75; p = .0007) and quality of life (odds ratio, 3.24; 95% CI, 1.93–5.41; p < .0001) after HCT.ConclusionsThe authors confirmed the significant, independent association of pre‐HCT PRO scores with overall survival, although adding PRO scores to the survival calculator did not improve its performance. They also demonstrated that a single general health question was as accurate as the full measure for predicting survival, an important finding that may reduce respondent burden and promote its inclusion in routine clinical practice. Validation of these findings should be performed.

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Key considerations to reduce or address respondent burden in patient-reported outcome (PRO) data collection

Cited by 65 publications

References 93 publications

Patient-Reported Outcome Measurement in Orthopaedic Trauma

Patient-Reported Outcome Measurement in Orthopaedic Trauma

Patient-Reported Outcome Measurement and Minimal Clinically Important Difference for Hand Surgeons

Incorporating patient‐reported outcome data into a predictive calculator for allogeneic hematopoietic cell transplantation recipients

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