Browsing by Subject "Patient-centered outcomes"

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    Identifying Patient-Centered Outcomes for Caregivers and Children With Musculoskeletal Infections
    (Oxford University Press, 2022-12-12) Wood, James B.; Hawryluk, Bridget; Lynch, Dustin; Claxton, Gina; Russell, Kelsey; Bennett, William E., Jr.; Wiehe, Sarah E.; Carroll, Aaron E.; Pediatrics, School of Medicine
    Background: Musculoskeletal infections (MSKI), including osteomyelitis and septic arthritis, are among the most common invasive infections in children and have the potential to cause significant morbidity. Guidelines have been developed to optimize care based on clinician-developed endpoints. Patient-centered outcomes have not been defined for children with MSKI. This study identified outcomes most important to caregivers and patients with MSKI. Methods: This was a single-center prospective qualitative study of children 6 months to 18 years of age hospitalized with MSKI from November 2019 to September 2021. Using design-research methods, patients and caregivers participated in interviews and/or completed journals to describe their experiences during acute infection and recovery from MSKI. Results: A total of 51 patient/caregivers were approached to participate in the study, 35 of whom declined to participate, resulting in 8 interviews conducted and 14 journals collected from 16 patient/caregivers. From these, a journey map was created highlighting points of stress during the onset of symptoms, through hospitalization, and returning home with new challenges. In addition, patient-centered outcomes were identified. For caregivers, these included managing mental health, managing responsibilities, and receiving support. Both caregivers and patients shared the importance of understanding of treatment plans and responsibilities. For patients, improving mental and physical health was important. Conclusions: Management of children with MSKI is complex and requires a multidisciplinary team approach. Validation of the outcomes identified and development of a measurement tool are needed. Addressing the patient-centered outcomes we identified in this study can greatly improve the holistic care of children with MSKI.
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    Measurement of Patients' Acceptable Symptom Levels and Priorities for Symptom Improvement in Advanced Prostate Cancer
    (Research Square, 2024-09-18) Snyder, Stella; Secinti, Ekin; Krueger, Ellen; Adra, Nabil; Pili, Roberto; Hanna, Nasser; Mosher, Catherine; Psychology, School of Science
    Purpose: Limited research has evaluated the success criteria and priorities for symptom improvement of patients with cancer to inform patient-centered care. In this study, we adapted and tested a measure of these constructs, the Patient-Centered Outcomes Questionnaire (PCOQ), for patients with advanced prostate cancer. We compared acceptable symptom severity levels following symptom treatment across 10 symptoms and identified patient subgroups based on symptom importance. Methods: Patients with advanced prostate cancer (N = 99) participated in a one-time survey, which included a modified version of the PCOQ, standard symptom measures, and additional clinical characteristics. Results: The modified PCOQ demonstrated construct validity through its correlations with related theoretical constructs. There was a moderate correlation between symptom severity and importance. Acceptable symptom severity levels were generally low, with sexual dysfunction having a higher acceptable severity than most other symptoms. Three patient subgroups were identified: (1) those who rated all symptoms as low in importance (n = 43); (2) those who rated all symptoms as moderately important (n = 33); and (3) those who rated all symptoms as highly important (n= 18). Subgroups were associated with functional status, fatigue, sleep problems, pain, and emotional distress. Conclusion: The modified PCOQ demonstrated preliminary evidence of construct validity. Patients generally considered low symptom severity to be acceptable, with variations across symptoms. Results suggest that symptom severity and importance are related but distinct aspects of the symptom experience in advanced prostate cancer. Patients' diverse priorities for symptom improvement point to the need for individualized treatment plans.
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    Measurement of Patients’ Acceptable Symptom Levels and Priorities for Symptom Improvement in Advanced Lung Cancer
    (Springer, 2021) Krueger, Ellen; Secinti, Ekin; Wu, Wei; Hanna, Nasser; Durm, Gregory; Einhorn, Lawrence; Jalal, Shadia; Mosher, Catherine E.; Psychiatry, School of Medicine
    Purpose: Little research has assessed cancer patients' success criteria and priorities for symptom improvement to inform patient-centered care. Thus, we modified and tested a measure of these constructs for advanced lung cancer patients. We compared acceptable severity levels following symptom treatment across eight symptoms and identified patient subgroups based on symptom importance. Methods: Advanced lung cancer patients (N=102) completed a one-time survey, including the modified Patient-Centered Outcomes Questionnaire (PCOQ), standard symptom measures, and other clinical characteristics. Results: The modified PCOQ showed evidence of construct validity through associations with theoretically related constructs. Symptom severity and importance were moderately correlated. Levels of acceptable symptom severity were low and did not differ across the eight symptoms. Four patient subgroups were identified: (1) those who rated all symptoms as low in importance (n=12); (2) those who rated bronchial symptoms and sleep problems as low in importance and all other symptoms as moderately important (n=29); (3) those who rated nausea and emotional distress as low in importance and all other symptoms as moderately important (n=23); and (4) those who rated all symptoms as highly important (n=33). Subgroups were unrelated to clinical characteristics, except for functional status. Conclusion: The modified PCOQ showed evidence of construct validity. Patients considered low symptom severity to be acceptable, irrespective of the symptom. Findings suggest that symptom severity and importance are related yet distinct aspects of the advanced lung cancer symptom experience. Patients have heterogeneous priorities for symptom improvement, which has implications for tailoring treatment.