From the Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine, Hanover, NH (Ms. Manohar and Dr. Oliver), the Department of Community & Family Medicine, Dartmouth-Hitchcock Medical Center, Lebanon, NH (Ms. Perkins, Ms. Laurion, and Dr. Oliver), and the Multiple Sclerosis Specialty Care Program, Concord Hospital, Concord, NH (Dr. Oliver).
- Background: Patient-reported outcomes (PROs), including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), can be used to assess perceived health status, functioning, quality of life, and experience of care. Complex chronic illnesses such as multiple sclerosis (MS) affect multiple aspects of health, and PROs can be applied in assessment and decision-making in MS care as well as in research pertaining to MS.
- Objective: To provide a general review of PROs, with a specific focus on implications for MS care.
- Methods: Evidence synthesis of available literature on PROs in MS care.
- Results: PROs (including PROMs and PREMs) have historically been utilized in research and are now being applied in clinical, improvement, and population health settings using learning health system approaches in many disease populations, including MS. Many challenges complicate the use of PROs in MS care, including reliability, validity, and interpretability of PROMs, as well as feasibility barriers due to time and financial constraints in clinical settings.
- Conclusion: PROs have the potential to better inform clinical care, empower patient-centered care, inform health care improvement efforts, and create the conditions for coproduction of health care services.
Keywords: PRO; PROM; patient-reported outcome measure; patient-reported experience measure; quality of life; patient-centered care.
Multiple sclerosis (MS) is a disabling, complex, chronic, immune-mediated disorder of the central nervous system (CNS). MS causes inflammatory and degenerative damage in the CNS, which disrupts signaling pathways.1 It is most commonly diagnosed in young adults and affects 2.3 million people worldwide.2 People with MS experience very different disease courses and a wide range of neurological symptoms, including visual, somatic, mental health, sensory, motor, and cognitive problems.1-3 Relapsing-remitting MS, the most common form, affects 85% of those with MS and is characterized by periods of relapse (exacerbation) and remission.1 Other forms of MS (primary progressive and secondary progressive MS) are characterized by progressive deterioration and worsening symptom severity without exacerbations. Disease-modifying therapies (DMTs) can reduce the frequency of exacerbations and disability progression, but unfortunately there is no cure for MS. Treatment is focused on increasing quality of life, minimizing disability, and maximizing wellness.
Patient-reported outcomes (PROs) describe the perceived health status, function, and/or experience of a person as obtained by direct self-report. Patient-reported outcome measures (PROMs) are validated PROs that can be used to inform clinical care,4 and have demonstrated effectiveness in improving patient-provider communication and decision-making.5-7 PROMs are currently used in some MS clinical trials to determine the impact of experimental interventions,8-10 and are also being used to inform and improve clinical care in some settings. Especially for persons with MS, they can provide individualized perspectives about health experience and outcomes.11 In more advanced applications, PROMs can be used to improve face-to-face collaborations between clinicians and patients and to inform patient-centered systems of care.12-14 PROMs can also be used to inform systems-level improvement for entire patient populations.15,16
In this article, we review current applications of PROs and PROMs in the care of persons with MS, as well as current limitations and barriers to their use.
Marion is a 26-year-old woman who first developed MS symptoms at age 16, including increased sensitivity to heat, blurry vision, and numbness in her legs (note: this case was developed based on interviews with persons with MS, obtained with appropriate consents, and does not represent a specific patient). At that time, her clinician attributed her symptoms to a car accident she had been in a few months before. Later, at age 20, she developed abdominal paresthesia, which her clinician attributed to an episode of shingles. At age 23, she developed double vision. She was evaluated by a neurologist and was diagnosed with MS. Marion started care with an MS specialists, who worked with her towards her goals of having a family, working, and exercising. In addition to appropriate medical care, she started martial arts training and biking for exercise and transitioned to a consulting position with flexible hours and the ability to work from home. Her daughter was born a year later.