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NIH Neuro-QOL Positive affect and Well-Being

NIH Neuro-QOL Positive affect and Well-Being is an electronic standard assessment patient reported subjective outcomes. The electronic delivery is often beneficial compared to paper assessments as they reduce data entry errors and increase enrollment. Qolty Neuro-QOL Positive affect and Well-Being is the ePRO system, and can be configured as a PRO tool that provides a short and reliable assessment forpositive affect with only the most informative items for an individual patient from an item bank based on the prior answers given by the patient.

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Introduction

Emotional experiences such as self-esteem, hope, self-efficacy, optimism, positive affect and well-being have been demonstrated by the emerging literature of ‘positive psychology’ as being relevant to health management and having the potential to lead to favorable health outcomes. Converging evidence has shown that higher aspects of positive psychology can be linked to better concurrent and future health prospects even after all the other aspects that have an impact on a person’s health have been accounted for. As opposed to the traditional models that mainly focused on psychopathology when evaluating psychological functioning, the inclusion of these emotional experiences under positive psychology provides a more comprehensive assessment that can be used to guide treatment models (Bertisch et al., 2015).

The biological correlates of positive affect and well-being that leads to health-protective biological responses have been postulated to be via the activation of immune, autonomic, neuroendocrine and inflammatory pathways in distinct and functionally meaningful ways. The beneficial aspects of positive affect and well-being on cardiovascular function (blood pressure &heart rate) have also been established. Feelings of optimism, well-being, hope, etc. can confer benefits to a person suffering from neurologic conditions beyond the intrinsic value of being happier. Since there are limited tools to measure the positive aspects of emotional functioning in patients with neurologic conditions such as epilepsy, Parkinson’s disease (PD) muscular dystrophy (MD), stroke, etc. Neuro-QoL (Quality of life in Neurological Disorders) developed the Neuro-QoL Positive Affect and Well-being (PAWB) instrument to measure these constructs in this population. Development of this instrument was sponsored by the National Institute of Neurological Disorders and Stroke (NINDS).

Methods

The Neuro-QoL PAWB instrument was designed through a collaborative, multi-site research initiative ensuring that items included in this domain were comprehensive and clinically relevant to patients with neurological conditions. Items were selected for inclusion through an extensive literature review, expert and patient interviews, caregiver focus groups as well as via an online request for information. On the basis of this input, pool items were selected for inclusion in the instrument to assess the well-being, hope, an overall sense of purpose & meaning and the positivity aspects of persons with neurological disorders. The identified pool items then underwent calibration testing in the general US population and in clinical samples via Item Response Theory (IRT) analyses resulting into the final 23 pool item banks and scales. The item banks and scales were then validated in adult clinical samples so as to enable reliable measurements of these constructs.

The employment of IRT analyses in the calibration of the Neuro-QoL PAWB instrument yielded several administration options including a Computer Adaptive Test (CAT) as well as a 9 item short form. The instrument can also be administered through a paper and pen. If a user hopes to optimize reliability, CAT would be the recommended route of administration. The short form is ideal in cases where it’s not feasible to administer the items via CAT or when clinicians and researchers wish to administer only the most informative and precise items based on a given patient’s responses. Qolty offers both versions (long and short) of the survey, and it can be taken irrespective of your location directly on your smartphone.

Neuro-QoL PAWB scores are standardized on a T-metric based on the calibration data. All CAT administrations of this instrument are automatically scored by the assessment center. When using the short form, all the 9 items must be filled so as to receive a score. The score is computed by summing the response scores from each specific item and identifying the associated T-score and standard error value from the calibration data.

Applications

Since aspects of positive psychology such as optimism, positive affect and well-being have demonstrated the ability to improve adaptation and outcomes in patients suffering from neurological disorders; their facilitation is an important target of intervention and examination.

Translations

It is available in German as well as in Spanish. The translation into Turkish is ongoing for the 23 item bank as well as into Swedish for the short form.

Results and Data analysis

The analysis included graded response IRT modeling, confirmatory factor analysis and evaluation of differential item functioning (DIF).

COSMIN

Parameter                                       Values
Excellent reliability 0.95
Excellent internal consistency 0.97
Root Mean Square Error of Approximation (RMSEA)  0.094
1-2 week test-retest reliability statistics Pearson’s coefficient (r) = 0.78

Intraclass correlation coefficient (ICC) = 0.78

95% confidence interval (CI) = 0.72 to 0.82

 

Excellent Confirmatory Fit Index (CFI) 0.947

 

Item correlations 0.715

Strengths and limitations

Strengths

The Neuro-QoL PAWB bank is a psychometrically robust measurement tool. The inclusion of psychological functioning is an important addition to conceptual models that seek to improve the overall quality of life of patients with neurological conditions. This instrument helps achieve a comprehensive, accurate and reliable assessment of positive psychology that can be used to guide classification and treatment models in persons with neurological complications.

Limitations

There are still many unanswered questions with regards to the positive psychological aspects that causes improved outcomes in patients with neurologic conditions and how those can be activated or enhanced alongside other treatment plans.

Summary & Key Points

  • Like all Neuro-QoL instruments, PAWB is a National Institute of Neurological Disorders and Stroke (NINDS) self-report quality of life measurement instrument for use in patients suffering from neurologic conditions.
  • Previous research and treatment on psychological outcomes in persons with neurologic conditions did not pay attention to the positive psychological factors in such subjects.
  • The PAWB instrument reflects a growing recognition and appreciation of the role and diversity of emotional responses in patients with neurological conditions.
  • The relationship between PAWB and psychobiological processes has already been established. An expansion of literature research on this is however needed to be more definitive as to how these associations emerge and can be enhanced (Bertisch et al., 2015).