INFORMED - Plantinga Research Team
The INstant Functional Outcomes Report for Meaningful Encounters in Dialysis (INFORMED) study aims to provide information to both dialysis patients and their providers about patients’ physical functioning, or how well patients are getting around and performing their daily tasks. This information is provided in the form of a functioning report. The goal of the report and the study is to improve patient-provider communication in the dialysis setting by making it more “patient-centered.” Patient-centered communication is respectful of, and responsive to, individual patient preferences, needs, and values.
INFORMED is funded by Satellite Healthcare, a not-for-profit renal care provider.
This report provides both patients and their providers information about how well patients are functioning in daily tasks. The information includes physical performance, life-space, falls, daily activities, and patient-reported physical functioning.
From the Short Physical Performance Battery (SPPB).1 The SPPB was originally designed for adults 70 or older and gives three scores for balance, walking speed, and strength (range for each, 0-4), plus an overall score (range, 0-12). Higher scores indicate better performance. Better physical performance has been associated with less disability, fewer hospitalizations, and greater ability to live independently.2-4 Faster walking speed is associated with better outcomes in older adults and in dialysis patients.5,6
From the UAB Life-Space Assessment7. Scores reflect how far the patient goes, how often, and with how much help, on a scale of 0 (no life-space mobility) to 120 (unlimited life-space mobility). A decline in life-space mobility of ≥10 points is similar to the decline that occurs with a hospital admission. Greater life-space mobility is associated with higher levels of social participation as well as mobility.8,9
From history of falls and the falls efficacy scale,10 which measures the level of confidence of the patient has in doing daily tasks without falling (scale of 0-100, with 100 being least confident on all tasks; a score of 70 or more is considered to reflect a fear of falling during daily tasks).
From the Katz basic activities of daily living (BADLs)11 and Lawton instrumental activities of daily living (IADLs)12 scales. Scores for each ADL were 0-3 [0=no difficulty, 1=some difficulty, 2=a lot of difficulty, and 3=unable to do activity]. Difficulties with IADLs may predict future difficulties with BADLs, and difficulties with BADLs make it less likely the patient will be able to live independently.
Patient-Reported Physical Functioning
From 10 items on the Kidney Disease Quality of Life (KDQOL) questionnaire.13 Scores are from 0 to 100, with higher scores for higher patient-reported functioning (average scores are 85 for the U.S. general population14 and 49 for the U.S. dialysis population15). Patient-reported physical functioning is a component of the patient’s overall health-related quality-of-life, and better reported functioning has been associated with fewer hospitalizations and fewer skipped dialysis sessions in hemodialysis patients.15,16,17
In addition to the patient’s kidney doctor (nephrologist), the following may be able to help patients address issues with functioning:
- Physical Therapists (PTs) - can help patients increase their balance or strength and create exercise plans.
- Occupational Therapists (OTs) - can help patients manage any difficulties they are having, by helping them change their surroundings or by changing their tasks to make them easier.
- Social Workers - can help patients with transportation, social services, and advance care planning (making decisions about the care you would want to receive if you became unable to speak for yourself).
- Dietitians - can help patients create and stick to their diet plans.
- Palliative Care Providers - can help provide relief from the symptoms and stress of illness. This can include pain management. The goal is to improve quality of life for both the patient and the family.
- Ophthalmologists (Eye Doctors) - can find and correct problems with patients’ ability to see that may be causing problems with functioning.
- Neurologists/Psychiatrists - can help patients improve their ability to remember and concentrate. Problems with these abilities can affect daily functioning.
- Psychiatrists/Psychologists/Behavioral Therapists - can help patients manage any problems such as depression or anxiety that may be affecting their daily functioning.
- Laura Plantinga, PhD, ScM, Principal Investigator, Assistant Professor, Emory University Department of Medicine
- Janice Lea, MD, MSCR, Co-Investigator, Medical Director, Emory Dialysis
- Anna Vandenberg, PhD, MPH, Co-Investigator, Assistant Professor, Emory University Department of Medicine
- Leigh Nadel, LMSW, Research Coordinator, Emory University Department of Medicine
Georgia Institute of Tehcnology
- Brian D. Jones, MSEE, Site Principal Investigator, Senior Research Scientist, Georgia Tech Interactive Media Technology Center
- C. David Byrd, Co-Investigator, Research Scientist, Georgia Tech Interactive Media Technology Center
- Amelia (Amy) Lambeth, Graphic Artist, Research Associate, Georgia Tech Interactive Media Technology Center
- C. Barrett Bowling, MD, MSPH, Assistant Professor, Duke University School of Medicine/VA Durham
- Theodore (Ted) Johnson II, MD, MPH, Chief, Division of General Medicine and Geriatrics
- Nancy Kutner, PhD, Professor of Rehabilitation Medicine and Sociology, Emory University
- Rachel Patzer, PhD, MPH, Assistant Professor, Emory University Department of Surgery
- Stephen Pastan, MD, Associate Professor, Emory University Department of Medicine
- Molly Perkins, PhD, MA, Assistant Professor, Emory University Department of Medicine