HOW CLINICIANS RECOGNIZE AND RESPOND TO CARE RECIPIENT SELF-PERCEIVED BURDEN: A MULTIDISCIPLINARY QUALITATIVE STUDY OF BARRIERS AND SUPPORTS IN CLINICAL PRACTICE
Author(s)
Michael Pham, MS, PharmD1, Pearl Craig, PharmD2, Annika Louise Pickard, MS3, David Cella, PhD4, A Simon Pickard, PhD5, Maja Kuharic, PhD6.
1Department of Pharmacy Systems, Outcomes, and Policy, University of Illinois at Chicago Department of Pharmacy Systems, Outcomes, and Policy, Chicago, IL, USA, 2Department of Pharmacy Systems, Outcomes, and Policy, University of Illinois Chicago, Chicago, IL, USA, 3Department of Pharmacy Systems, Outcomes, and Policy, UIC College of Pharmacy, Chicago, IL, USA, 4Northwestern University, Evanston, IL, USA, 5Department of Pharmacy Systems, Outcomes, and Policy, University of Illinois, Chicago, Chicago, IL, USA, 6Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
1Department of Pharmacy Systems, Outcomes, and Policy, University of Illinois at Chicago Department of Pharmacy Systems, Outcomes, and Policy, Chicago, IL, USA, 2Department of Pharmacy Systems, Outcomes, and Policy, University of Illinois Chicago, Chicago, IL, USA, 3Department of Pharmacy Systems, Outcomes, and Policy, UIC College of Pharmacy, Chicago, IL, USA, 4Northwestern University, Evanston, IL, USA, 5Department of Pharmacy Systems, Outcomes, and Policy, University of Illinois, Chicago, Chicago, IL, USA, 6Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
OBJECTIVES: Care recipient self-perceived burden (CR-SPB), patients' sense of burdening their caregivers, influences healthcare decisions, yet few studies examine it from the clinician's perspective. This study characterized how clinicians across disciplines recognize and respond to CR-SPB in patients with chronic conditions, and asked whether it should be systematically assessed in care and coverage decisions.
METHODS: Semi-structured interviews with seven purposively sampled clinicians (social work, nursing, medicine, psychology) spanning academic, community, outpatient, private-practice, Veterans Affairs, home-based, and hospice settings were analyzed using the Framework Method in NVivo 15. Transcripts were independently double-coded using a structured codebook, with inter-rater reliability assessed using the prevalence-adjusted bias-adjusted kappa (PABAK). AI tools assisted framework charting, with outputs researcher-verified against source transcripts. Findings were organized around implementation domains.
RESULTS: Clinicians reported encountering CR-SPB across practice settings (7/7), but inconsistently identified it. None used a validated CR-SPB-specific screen. They recognized it through psychosocial or biopsychosocial assessments, rapport-building, patient- and caregiver-cues, or organic disclosure. Clinicians noted patients downplaying or withholding it (4/7) and delaying or avoiding emergency care (6/7). Responses included social-work or interdisciplinary referral, community resources, caregiver-support programs, supportive counselling, and practical problem-solving. All reported barriers: limited time, competing priorities, limited training, unclear next steps, clinician variability or desensitization, topic sensitivity, resource constraints, and patient concealment. All considered CR-SPB important, and 6/7 would weigh it in treatment choices when clinical options were otherwise comparable. All supported systematic measurement and assessment, seeking tools, training, and implementation resources rather than a standalone checkbox.
CONCLUSIONS: Clinicians recognize CR-SPB inconsistently and without dedicated tools, yet treat it as a patient-important outcome relevant to treatment choices. Findings support a brief patient-reported CR-SPB measure, paired with training and incorporated into patient-centered care and value assessment.
METHODS: Semi-structured interviews with seven purposively sampled clinicians (social work, nursing, medicine, psychology) spanning academic, community, outpatient, private-practice, Veterans Affairs, home-based, and hospice settings were analyzed using the Framework Method in NVivo 15. Transcripts were independently double-coded using a structured codebook, with inter-rater reliability assessed using the prevalence-adjusted bias-adjusted kappa (PABAK). AI tools assisted framework charting, with outputs researcher-verified against source transcripts. Findings were organized around implementation domains.
RESULTS: Clinicians reported encountering CR-SPB across practice settings (7/7), but inconsistently identified it. None used a validated CR-SPB-specific screen. They recognized it through psychosocial or biopsychosocial assessments, rapport-building, patient- and caregiver-cues, or organic disclosure. Clinicians noted patients downplaying or withholding it (4/7) and delaying or avoiding emergency care (6/7). Responses included social-work or interdisciplinary referral, community resources, caregiver-support programs, supportive counselling, and practical problem-solving. All reported barriers: limited time, competing priorities, limited training, unclear next steps, clinician variability or desensitization, topic sensitivity, resource constraints, and patient concealment. All considered CR-SPB important, and 6/7 would weigh it in treatment choices when clinical options were otherwise comparable. All supported systematic measurement and assessment, seeking tools, training, and implementation resources rather than a standalone checkbox.
CONCLUSIONS: Clinicians recognize CR-SPB inconsistently and without dedicated tools, yet treat it as a patient-important outcome relevant to treatment choices. Findings support a brief patient-reported CR-SPB measure, paired with training and incorporated into patient-centered care and value assessment.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR50
Topic
Health Service Delivery & Process of Care, Methodological & Statistical Research, Patient-Centered Research
Topic Subcategory
Instrument Development, Validation, & Translation, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Geriatrics, Mental Health (including addiction), No Additional Disease & Conditions/Specialized Treatment Areas, Oncology, Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)