List of Adult Measures

Available Neuro-QoLTM Measures for Adult Self-Report

 Adult Domains  Definition Bank/Scale/Pool
# items
Short Form
# items
Ability to Participate in Social Roles and Activities Degree of involvement in one’s usual social roles, activities, and responsibilities; including work, family, friends, and leisure. 45 8
Anxiety Unpleasant thoughts and/or feelings related to fear (e.g., fearfulness, feelings of panic), helplessness, worry and hyperarousal (e.g., tension, nervousness, restlessness). 21 8
Bowel Function*   58  
Chorea (HDQLIFE) The impact that chorea (which comprises irregular, random involuntary movements of varying amplitude affecting the face, trunk, and limbs) has on physical activity, participation and health related quality of life (HRQOL) in individuals with Huntington Disease 34 6
Cognitive Function Perceived difficulties in cognitive abilities (e.g., memory, attention, and decision making) or in the application of such abilities to everyday tasks (e.g., planning, organizing, calculating, remembering, and learning).  28 8
Communication** Perceived difficulties related to oral expression, language production, articulation, comprehension, and organization.  5  
Concern with Death and Dying (HDQLIFE) Impact that concerns and preoccupation with death and dying has on HRQOL 12 6
Depression Experience of loss and feelings of hopelessness, negative mood (e.g., sadness, guilt), decrease in positive affect (e.g., loss of interest), information-processing deficits (e.g., problems in decision-making), negative views of the self (e.g., self-criticism, worthlessness), and negative social cognition (e.g., loneliness). 24 8
Emotional and Behavioral Dyscontrol A set of disease and/or treatment related manifestations including disinhibition, emotional lability, irritability, impatience, and impulsiveness. 18 8
End of Life Planning (HDQLIFE) Assesses an individual's preferences about end of life care    
Fatigue Sensations ranging from tiredness to an overwhelming, debilitating, and sustained sense of exhaustion that decreases one’s capacity for physical, functional, social, and mental activities. 19 8
Lower Extremity Function - Mobility One's ability to carry out various activities involving the trunk region and increasing degrees of bodily movement, ambulation, balance, or endurance. 19 8
Positive Affect and Well- Being Aspects of a person’s life that relate to a sense of well-being, life satisfaction, or an overall sense of purpose and meaning. 23 9
Satisfaction with Social Roles and Activities Satisfaction with involvement in one's usual social roles, activities, and responsibilities; including work, family, friends, and leisure. 45 8
Sleep Disturbance Perceptions of sleep quality, sleep depth, and restoration associated with sleep; perceived difficulties with getting to sleep or staying asleep; and perceptions of the adequacy of and satisfaction with sleep.  8  
Sexual Function*   71  
Speech Difficulties (HDQLIFE) Impact that perceived difficulties in oral expression, language production, and articulation have on communication and general well-being 27 6
Stigma Perceptions of self and publically enacted negativity, prejudice, and discrimination as a result of disease-related manifestations. 24 8
Swallowing Difficulties (HDQLIFE) The effect that problems with swallowing (prepatory, oral, and pharyngeal) and choking have on eating and overall well-being    
Upper Extremity Function - Fine Motor, ADL One's ability to carry out various activities involving digital, manual, and reach-related functions, ranging from fine motor to self-care (activities of daily living). 20 8
Urinary/Bladder Function*   136  

*Untested Item Pool. These are sets of questions that were acquired during the Neuro-QoL project from colleagues who agreed to share them for possible use and distribution. They are included here in the hope that future research will lead to proper scaling, scoring, and interpretation guidelines.

**uncalibrated item scale

Types of Measures

Neuro-QoL measures the functions, symptoms, behaviors, and feelings identified as important by people with neurological conditions and their caregivers. Neuro-QoL measures include item banks that can be administered as computer adaptive tests (CATs) or as fixed length short forms. There are also uncalibrated item pools which use a raw summary score. All measures are self-reported.

Translations

There are many available translations of Neuro-QoL measures.