Health Measures website

• Additional information on the Neuro-QoL including free PDFs of short forms and necessary manuals are available at: www.healthmeasures.net

Direct links to manuals

• There are 2 manuals for the Nuro-QoL both are available for free via the Health Measures website, linked below.

• User Manual: https://www.healthmeasures.net/explore-measurement-systems/neuro-qol/measure-development-research/125-measure-development-research

• Scoring Manual: https://www.healthmeasures.net/score-and-interpret/calculate-scores/scoring-instructions/254-scoring-instructions

Neuro-QoL Psychometrics

Reliability

Reliability coefficient

When the T-score is 50 (representing the mean of the centering sample) all measures have a standard error score of 0.93 to 0.99 with the exception of:

• Upper Extremity-Fine Motor, ADL SE = 0.78

• Sleep disturbance SE = 0.88

This indicates overall excellent reliability coefficients for the measure.

(NINDS, 2015)

Test-retest reliability

• Test-retest reliability is examined in the literature for each measure both condition/disease specific and cross-condition.

• In the Nuro-QoL technical report from 2015 cross-condition test-retest reliability for each short form was evaluated baseline and again at 7 days with intraclass correlation coefficients (ICC) = 0.57 to 0.89 (NINDS, 2015).

• For instance, Huntington’s Disease (HD)has disease specific Neuro-QoL measures which are also reflected in the literature: Physical function: 1-day to three 3ay test-retest excellent, ICC > 0.85. Neuro-QoL test-retests at 12 and 24 months also indicate test-retest reliability. (Carlozzi, Boileau,& Chou et al., 2020) Social function measure is likewise excellent after 12 and 24 months (Carlozzi, Boileau, & Hahn et al., 2020)

• The Neuro-QoL is also validated for use with Parkinson’s disease clients with ICC = 0.66 to 0.80 (Nawinski et al., 2016).

Internal consistency

For Neuro-QoL Short Forms:

• CVA: Cronbach’s α between .83 and .94; intraclass correlation coefficient (ICC) from .57 to .89

• ALS: Cronbach’s α between .79 and .94; ICC from .48 to .92

• MS: Cronbach’s α between .81 and .95; ICC from .72 to .91

• PD: Cronbach’s α between .81 and .94; ICC from .6880 to .80

• Adult Epilepsy: Cronbach’s α between .86 and .95; ICC from .40 to .80

• Muscular Dystrophy: Cronbach’s α between .81 and .98; ICC from .61 to .97

(NINDS, 2015)

Within the Neuro-QoL itself, correlations between the short form and full item banks range from r=0.97 to 1.00

When individuals with comorbidities and activity limitations are compared with the centering sample the effect size ranges from 0.43 to 1.28.

(Cella et al., 2012)

Inter-rater reliability

NA. Neuro-QoL is a self-report measure that uses T-scores to compare against the centering sample.

Validity

Content validity

The Neuro-QoL undergoes periodic revision to ensure content it measures constructs relevant to populations experiencing neurologic conditions. The development of the Neuro-QoL was sponsored by the National Institute for Neurological Disorders and Stroke with specific goals in mind and with the explicit purpose of creating a psychometrically robust and clinically relevant health-related QOL measure. Each item was developed using systematic review of similarly proposed scales, professional review of individual items, focus group input, patient interview, and field testing. (NINDS, 2015)

Detailed information about development and field testing is available as a PDF through the Neuro-QoL section of the Health Measures website.

Concurrent validity

Widely studied with disease specific measures and cross-disease measures. Relevant cross disease measures with p < .05 are listed below:

• Barthel Index: p < .05 in 10 out of 12 Neruo-QOL short from measures.

• Lawton IADL Scale: p < .05 in 9 out of 12 Neruo-QOL short from measures.

• PROMIS Global Physical: p < .05 in 11 out of 12 Neruo-QOL short from measures.

• PROMIS Global Mental: p < .05 in 11 out of 12 Neruo-QOL short from measures.

• Pain Scale (0-10): p < .05 in 10 out of 12 Neruo-QOL short from measures.

• EQ-5D Index Score: p < .05 for all Neuro-QoL measures

• Global HRQL: p < .05 for all Neuro-QoL measures

(NINDS, 2015)

Relationship to occupational therapy

The Nuro-QoL sub measures are described here in relation to concepts outlined in the Occupational Therapy Practice Framework: Domain and Process 4th Ed. (AOTA, 2020).

Social Health:

Ability to participate in social roles & activities

• Social participation is a category of occupation in the Occupational Therapy Practice Framework: Domain and Process Fourth Edition (OTPF-4) as are leisure and work which are also addressed in this sub measure. This sub measure describes the ability to engage in performance patterns associated with social participation, rather than discrete social skills.

Satisfaction with social roles and activities

• Social participation is a category of occupation in the OTPF-4 as are leisure and work which are also addressed in this sub measure. This sub measure describes satisfaction with social performance patterns associated with social participation such as family participation, friendships, and community participation.

Mental Health:

Anxiety

• The impact described feelings of anxiety (unease, nervousness, worry, overwhelm, tension, panic) can have on occupational performance. Additionally, ‘social and emotional health promotion and management' and 'symptom and condition management' are occupations under the category of Health Management in the OTPF-4.The final item is distinctly occupation based as it asks about response to disruptions in normal routine, which consists of many performance patterns and skills. This is relevant because occupational therapy (OT) helps people remain engaged in routines of daily life.

Depression

• Within the OTPF-4 'social and emotional health promotion and management' and 'symptom and condition management' are occupations under the category of Health Management. While OTs do not diagnose depression, occupational performance can be disrupted by depression. Depression can make everyday routines and tasks difficult or impossible, understanding a client’s subjective experience of depressive feelings can help with designing engaging occupation based interventions that will be motivating. The final item, 'I felt that nothing was interesting' can easily apply to a myriad of occupations from ADL/IADLs to leisure and social participation.

Concern with death & dying

• Occupational therapists work with people at all stages of their life, including end of life. As mandatory reporters the items in this sub measure can help OTs know when and how to address death and dying. This sub measure pairs well with the sub measure for depression and could be used as a follow up if a client indicates they are experiencing depressive feelings, such as worthlessness. This sub measure asks, 'How often did you think about ending your life?' Suicide among older adults in particular is a concern, and one that might not be readily considered in some settings. According to the National Council on Aging in 2017 8,500 out of 47,000 deaths by suicide were adults over the age of 65 (National Council on Aging, 2021). This sub measure could provide life saving insight and help direct clients to other professionals for treatment. However, none of the items specifically address performance patterns or skills within the domain and process of OT.

Positive Affect & Well-being

• 'Social and emotional health promotion and management' and 'symptom and condition management' are occupations under the category of Health Management in the OTPF-4. While items on this measure do not specifically address occupational participation, many of the items could be helpful in understanding performance patterns and deficits. For example, the items addressing feelings of hope, satisfaction, purpose, and balance can help clinicians when determining appropriate interventions that will build confidence, motivation, and ultimately support occupational performance. The information would also be very important to include in an occupational profile. This sub assessment also provides insight that may indicate when additional services are needed, such as a recommendation to a psychologist or psychiatrist.

Emotional & behavioral dyscontrol

• In the OTPF-4 'social and emotional health promotion and management' and 'symptom and condition management' are occupations under the category of Health Management. The OTPF-4 describes 'expresses emotions' as an important skill for social participation and describes this as, 'displays affect and emotions in a socially appropriate manner,' (OTP-4 p. 48) This sub measure relies on client self report of emotional and behavioral dyscontrol, which may be different than that reported by caregivers. Importantly. All items on this sub measure describe ways that an inability to express emotions or control behavior may manifest.

Cognitive function

• Cognitive items ask about performance skills and patterns such as: thinking/concentrating, reading comprehension, following instructions, planning, new learning, and time management which are all needed for occupational performance and to improve/remediate occupational functioning. All items relate to cognitive skills required for occupational participation.

Communication

• Communication management is an IADL. This sub measure addresses performance skills (writing notes and carrying a conversation), as well as the cognitive process of organizing written and verbal communication. Communication as a social skill is also reflected. This sub measure may be more appropriate for other professions, if available (such as SLP), otherwise OT is an appropriate choice to administer this sub measure as communication is a necessary component of many occupations.

Stigma

• This sub measure may be relevant to OT in some settings and situations. Broadly speaking, this sub measure addresses the interpersonal and intrapersonal results of perceived stigma and self-stigma. This sub assessment highlights how subjective experience of stigma can impact occupational performance patterns and limits ability to use social skills in meaningful ways to connect with others. Items indicate potential impact stigma has on social occupations, such as 'Because of my illness, some people avoided me' and 'Because of my illness, I felt left out of things.' (5 out of 8 items can be viewed as applying to social situations and occupations).

End of life planning (HDQLIFE** only)

• This sub measure is relevant OT in some settings and situations, under the OTPF-4 category of occupation 'Health Management' end of life planning could be considered part of symptom and condition management. This sub measure is specific for Huntington Disease, but could be useful when supporting clients approaching their end of life. OTs serve individuals throughout the lifespan and work in palliative care and hospice settings. OTs also provide home health care services and long term care services and for some clients their OT may be trusted with difficult conversations such as end of life planning. Some occupations associated with preparing for death are within the role and scope of OT, such as maintaining and adapting tools for clients to remain independent with self administering approved life ending medications (this potentially covered in the item 'Preference about death.') Note: As of 1997 in Oregon, The Death with Dignity Act makes this a legal option (cite the act here). However, none of the items specifically address performance patterns or skills within the domain and process of OT.

Military health care frustration (TBI specific)

• Does not address performance skills, ADL, or IADL. Does address health management, a separate category of occupation in the OTPF-4. Could be useful for OTs in specific settings, such as the Department of Veterans Affairs.

Caregiver concerns (TBI specific & 7 sub assessments) Note: Caregiver Strain & Feeling Trapped short form sub assessments were viewed for this review.

• The caregiver strain sub measure asks about the subjective experience of caregiving, including stress, time management, and caregiver burden. The feeling Trapped sub measure asks about the social challenges that arise from being a caregiver, ability to perform ADL/IADLs (running errands), and feeling about lack of personal freedom.

Physical Health:

Fatigue

• Asks about fatigue impact on performance patterns (roles, habits, and routines), household chores, ability to leave the house, ability to do desired 'things' (which could indicate any of the nine categories of occupation), and social activity. 4 of 8 items in this measure directly relate to OT scope of practice.

Sleep disturbance

• Rest and Sleep is a category of occupation outlined in the OTPF-4. Items address sleep disturbance impact on getting up in the morning, daytime wakefulness, and sleep’s influence on canceling social activities. The entire sub measure is relevant to sleep as an occupation.

Lower extremity function (Mobility)

• 7 out of 8 items ask about ability to do specific tasks or use skills that enable occupation.

Upper extremity function (Fine motor, ADL)

• 8 out of 8 items ask about ability to do specific tasks related to ADLs or describe performance skills. Very relevant to OT's emphasis on functional ability.

Chorea (HDQLIFE)

• Items address ADLs (dressing, eating, and mobility) and IADLs (socializing). All items are relevant to occupational participation.

Speech difficulties (HDQLIFE)

• This sub assessment is somewhat relevant for OT; possibly more relevant for other professions (such as SLP). Items are about speech with one item about the social impact of speech..

Swallowing difficulties (HDQLIFE)

• This sub assessment is somewhat relevant for OT; possibly more relevant for other professions (such as SLP) if they are available on site. 'Feeding' and 'eating and swallowing' are considered ADLs in the OTPF-4. One item asks about 'eating' which could be interpreted as getting food to mouth, which is specifically in the OTPF-4 as 'feeding.'

**HDQLIFE = Huntington's Disease Quality of Life