Table 4.

Patient Health Outcomes from the Framework for Outcomes in Clinical commUnication Services (FOCUS)

Patient Health Outcome Categoriesa	Description (examples of relationship to patient changes)	Example Measuresb
Survival [1–3] (i.e., reduced mortality)	Longer life as the result of diagnosing and managing acondition or risk factor. (Improving timely access to appropriate care can lead to increased survival. Quality health decisions and adherence or self-care can also improve survival.)	Overall survival; disease-free survival; net cancer-specific survival [4] Survival has been proven to increase if patients with Lynch syndrome adhere to cancer screening/surveillance recommendations. [5]
Symptoms and suffering [1–3] (i.e., reduced morbidity)	Reduction or prevention of disease-related symptoms or side effects of treatment (i.e., reduction in fatigue, pain, sleep disturbance, etc). (Eliciting information from the patient about side-effects may lead to a change in treatment and decrease in suffering. Discussing pain is critical to ensure appropriate medication is provided to reduce the pain. Sleep can be impacted by negative emotions related to a health risk, side effects of medication, or pain.)	Proportion of patients who report a reduction in physical suffering (scale measures how often symptoms were experienced and how much they bothered the patient) [6] Proportion of patients who report a decrease in side effects of treatment. c PROMIS measures: Proportion of patients who report improvements in pain intensity or interference; or sleep disturbance, sleep-related impairment. [7, 8]
Physical functioning [9] (includes physical aspects of Health Related Quality of Life (HRQoL) measures)	Ability to carry out activities that require physical actions (i.e., mobility levels, energy/vitality levels, self-care skills, sexual activity, exercise, work or school) (Access to appropriate care, reductions in negative emotions, and increases in positive coping can improve physical functioning.)	Loss of function sub-scale of the SOS-V [10] c PROMIS measures: Physical function [11] SF-36: Physical function, limitations to physical health, vitality subscales Validating the SF-36 health survey questionnaire [12] Global Assessment of Functioning (clinician rated) [13] c PROMIS measure: Sexual function [14] Days missed from work or school within a certain time period
Social functioning [9] (includes social health aspects of HRQoL measures)	Overall participation in social activities that a patient desires. Provision and receipt of support from family friends, and others. (Reductions in negative emotions, positive coping and feeling empowered to access support resources can improve social functioning.)	Social functioning from the SF-36 Validating the SF-36 health survey questionnaire [12] c PROMIS measures: Ability to participate in social roles/activities, social support, social isolation [16–18]
Cognitive functioning [1]–[3], [18]	Ability to concentrate and perform cognitive tasks that are desired by a patient. These include executing activities such as: logical speech, mental calculations, reading, learning, and work requiring cognitive functions. (An accurate diagnosis can reduce time spent worrying, thereby improving ability to concentrate on other tasks.)	Functional capacity in mental health [19]
Existential well-being [1–3, 5, 6]	Overall sense of purpose, hope, completeness, contentment, and satisfaction with life. (People who demonstrate positive coping behaviors and find a sense of purpose to their health situation may have improved overall well-being.)	Measure of “existential distress” which is the reverse of existential well-being [22] c PROMIS measures for children: life satisfaction, meaning and purpose in life [23]
Mental Health [9] (includes mental health aspects of HRQoL measures)	Absence of psychological problems including anxiety and depression. (Having a diagnosis can reduce depression and anxiety even if there is no treatment because a diagnosis can help people cope, adapt, and access support resources.)	PROMIS measures: Anxiety and depression scales c [24, 25] Overview of Measures of Anxiety [26] State Trait Anxiety Inventory (STAI) [27] Hospital anxiety and depression scale (HADS) [28] Center for Epidemiological studies depression scale (CES-D) [29]

^aPatient Health Outcomes include changes in health and well-being that occur as a direct or indirect result of receiving health services.

^bMeasures are often patient reported, but can be performance-based measures, caregiver/proxy reported or direct observation.

^cPatient reported outcomes measurement information system (PROMIS) has many assessment measures that reflect patient-reported health. These are calibrated item banks or scales, item pools or short forms http://www.nihpromis.org/Documents/InstrumentsAvailable_11516_508.pdf

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