Pain and Pain-Related Questionnaires

 

Pain is a subjective experience that can impact, and be impacted by, multiple domains of a person’s life, such as mental health and physical function. Given the biopsychosocial nature of pain, it is important to apply a biopsychosocial framework in clinical assessment and symptom monitoring.  

Administering measures across biopsychosocial domains can facilitate discussions between the clinician and person living with pain to use a shared decision-making approach for determining the focus of treatment. This approach acknowledges that the person is the expert of their pain experience and involves them as an active participant in identifying valued areas of treatment. For example, beyond reduced pain intensity, the person might also hope to make gains in physical function, or have increased engagement in social activities.   

Biopsychosocial assessment of pain can be facilitated by using measures across multiple life domains. Most of the measures below are derived from toolboxes or core outcomes sets (COS) that the NIH Pain Consortium and other NIH initiatives helped create or curate. These initiatives are described at the end of this page.  

 

Commonly Used Pain and Pain-Related Questionnaires 

Many measures exist to assess aspects of pain, its comorbidities, and physical function. Below is a set of brief measures that can be used to assess life domains that might be important to a person living with pain. It might be helpful for a clinician to administer this set of brief measures when a person first begins reporting pain or is new to the clinic. Elevated scores on any of these brief measure (or if the person expresses that a specific life domain is important to them) can be followed up using more comprehensive measures, which are provided later in this page.  

 

* NIH Helping End Addiction Long-term^® Initiative (NIH HEAL Initiative) Common Data Element core pain measures

 

Additional Questionnaires to Consider Based on Domain 

When a person living with pain has an elevated score on a brief measure, comprehensive measures can be administered at a future visit to better characterize the person’s concerns within that domain. Below is a list of comprehensive measures for a variety of domains.  

 

 

General Pain Attributes 

These measures assess attributes associated with a person’s pain, such as pain intensity, interference, and quality, regardless of the specific pain condition. 

 

 

General Pain Attributes Measures

 

 

 

 

Condition-Specific Pain Attributes 

These measures assess attributes associated with specific pain conditions, such as arthritis, fibromyalgia, and sickle cell disease.  

Condition-Specific Pain Attributes Measures

 

 

 

 

Quality of Life 

Quality of life measures assess the degree to which an individual is healthy, comfortable, and able to participate in or enjoy life events. 

Quality of Life Measures

 

 

 

 

Physical Function and Disability 

Although a person’s level of physical function and activity does not reflect their level of pain, pain can impact physical function, and physical activity can impact pain. These measures, either through self-report or observer rating, assess the degree to which individuals can perform certain activities requiring physical actions.  

Physical Function and Disability Measures

 

 

 

Mental Health Status 

Pain can negatively impact mental health and unmanaged mental health symptoms can exacerbate pain. Mental health assessment during a pain care visit might unintentionally invalidate a person’s pain experience if not done with care. A provider’s empathy and humility can help create a trustworthy space for a person to discuss their mental health concerns. The measures below assess mental health symptoms and their severity.

Mental Health Status Measures

 

 

 

 

Sleep and Fatigue 

Pain can interfere with sleep, and poor sleep can exacerbate pain. The measures below assess aspects of fatigue (experience of extreme tiredness), sleepiness (difficulty staying awake/alert), and sleep (quality of sleep or presence/severity of insomnia symptoms).

Sleep and Fatigue Measures

 

 

 

 

 

 

Cognitive and Affective Pain and Treatment Factors 

Assessing cognitive and affective factors related to pain and treatment can help identify a person’s beliefs, expectations, and concerns related to pain and treatment that might influence treatment responses. Further, it can help identify areas of coping and resilience to leverage a person’s strengths in treatment.  

Cognitive and Affective Pain and Treatment Factors Measures

 

 

 

Social Contributors to Health 

The burden of pain is inequitably distributed so that individuals from minoritized and marginalized groups tend to experience higher impact chronic pain yet poorer treatment in pain care. Understanding social contributors to pain and health can characterize additional areas for intervention, such as coping with discrimination, leveraging social supports, and addressing resource needs.

Social Contributors to Health Measures

 

 

 

 

 

Medication and Substance Use  

Chronic pain is not a unique risk factor for concerning substance use. In primary care settings, people with and without chronic pain are similarly at risk for concerning substance use. Further, studies have shown that most people with co-occurring chronic pain and substance use disorder experienced concerning substance use prior to the onset of their chronic pain. Yet, many people with chronic pain alone experience stigma based on perceived substance use disorder. It is important that clinicians use a high level of intentionality and humility in assessing substance use to avoid stigmatizing people with chronic pain.  

Medication and Substance Use Measures

 

 

 

 

 

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Explanation of Collections:  

 

PROMIS Measures 

PROMIS is a set of brief questionnaires that helps evaluate and monitor an individual’s physical, mental, and social health. There are many validated PROMIS measures available, and more information about PROMIS measures can be found here. PROMIS questionnaires relevant to pain and its comorbidities are available to measure pain intensity, pain interference, pain quality, pain behaviors, physical function, self-efficacy for managing symptoms or medications, anxiety, depression, fatigue, and sleep disturbance. 

 

NIH Toolbox 

The NIH Toolbox contains comprehensive 30-minute batteries to assess cognitive, emotional, sensory and motor functions. It is appropriate for use in general population, people with chronic conditions and people of all ages. Within the sensation measures battery, this toolbox assesses two pain related domains – Pain Interference and Pain Intensity. These pain measures are stand-alone measures but are included in the toolbox as part of a battery of measures meant to assess sensation. 

 

NIDA Clinical Trials Network Common Data Elements 

The National Institute on Drug Abuse (NIDA) Clinical Trials Network (CTN) has a set of standardized, measures that make up their common data elements (CDEs). These measures make up a consensus-based set of CDEs that can be used for the screening and initial assessment of substance use disorders (SUDs) that can be use in research and general medical settings. These measures are used by all trials supported by the NIDA CTN. Though these CDEs are designed for SUD research they assess two pain-specific domains. https://cde.drugabuse.gov/instruments 

 

NIH HEAL® Core Common Data Elements 

NIH staff, in collaboration with NIH HEAL® Initiative investigators and other pain research experts, went through a comprehensive process to identify nine core pain domains that should be assessed in HEAL studies and the questionnaires that should be used to measure each domain. Questionnaires were identified for the nine pain domains: pain intensity; pain interference; physical functioning/quality of life; sleep; pain catastrophizing; depression; anxiety; global satisfaction with treatment; and substance use.  For more information, please see the NIH HEAL Initiative common data elements web page: https://heal.nih.gov/data/common-data-elements. Beyond the core CDEs, the NIH HEAL Initiative investigators are using hundreds of other questionnaires in their studies and these make up the HEAL CDE supplemental questionnaire collection.

 

Chronic Overlapping Pain Conditions Screener (COPCS) 

The COPCS is an assessment tool that helps in the identification of different COPCs that may co-exist within a given individual. The COPCS site provides a video demo of the COPCS in use, a downloadable user's guide, access to a working demo version of the COPCS, and a link for obtaining a license to acquire an executable version for use with REDCap. Conditions of use: Students, physicians, clinical practice, and not-funded academic users may access the questionnaire and/or its available translations directly (see tutorial). Funded academic users, healthcare organizations, and commercial users & IT companies may have fees that apply to their project and can submit a request (see tutorial).  

 

ASCQ-Me® Adult Sickle Cell Quality of Life Measurement Information System

ASCQ-Me is a set of self-report measures for use with adults with sickle cell disease that was developed through a collaboration between the National Heart, Lung, and Blood Institute (NHLBI) and the American Institutes for Research (AIR). Information related to the development of this measure can be found here and here. Measures assess physical, mental, and social health as well as information about the severity of one’s disease.