The Illness Index Questionnaires
The Illness Index questionnaires measure appraisal of the biopsychosocial effects of a disease, injury, or congenital disorder and Health-Related Quality of Life (HR-QOL). There are three versions of the Illness Index:
-
The Illness Index is completed by the patient to obtain their appraisal of the biopsychosocial impact of a disease, congenital disorder, or injury.
-
The Illness Index – Professional is intended for the physician, physician assistant, nurse, or other healthcare provider who is familiar with the patient and their condition to provide a professional assessment of the likely HR-QOL concerns based on their knowledge of the patient's condition.
-
The Illness Index – Observer is intended for a non-medical informant who is familiar with the patient (usually a family member) to provide a perspective of the patient’s illness experience outside of the clinical care setting.
-
A fourth measure, the Treatment Index, provides a patient appraisal of HR-QOL concerns related to the impact of a treatment.
Research and professional consensus has long established that the evaluations people construct of their illness experience have implications for recovery from disease, longevity, medical compliance, mood, and adjustment. The NIH Consensus Statement on surgery for epilepsy (1990) stated that in addition to showing a decline in the number of seizures, the effectiveness of neurosurgery “…should use general measures of outcome that would take advantage of validated and quantitative methods to assess the quality of life.”
HR-QOL may be important when dealing with limited healthcare dollars or resources. Policymakers, insurers, healthcare professionals, and professional organizations increasingly emphasize quality-of-life assessments and may use a cost-benefit analysis to make treatment and economic decisions about access to expensive care or drugs that may prolong life but provide unknown quality-of-life gains. Thus, assessing HR-QOL should be part of a medical assessment. HR-QOL data are ideal for inclusion in electronic health records.
When a multiple-informant assessment using the Illness Index measures is available, a clinically rich set of hypotheses emerges. The manual provides information about these hypotheses and guidance on how to clinically follow up on the responses. Different profiles can be associated with a variety of patient behaviors that can impact care and, potentially, patient health. An example is provided below. The manual offers interpretative approaches for all 20 items, as well as clinical intervention strategies.
For example, when a patient is reporting above expected illness impact appraisal compared to the healthcare provider's assessment, and below average appraisal for that condition compared to a group, several hypotheses can be generated from this profile:
The Illness Index forms and manual are freely accessible via the Downloads page. Contact PRT (PRTpublishing@gmail.com) for the password.
The American College of Surgeons’ Commission on Cancer
ACSCC Psychosocial Distress Screening Standard 3.2
The American College of Surgeons’ Commission on Cancer requires cancer centers to implement a stress screening program in order to maintain accreditation status and the emphasis on patient-centered care. The Illness Index measures are ideal for this purpose.
Center for Disease Control and Prevention
"Focusing on HR-QOL as a national health standard can bridge boundaries between disciplines and between social, mental, and medical services. Several recent federal policy changes underscore the need for measuring HR-QOL to supplement public health’s traditional measures of morbidity and mortality.”