Illness Index

What is Illness Index

The Illness Index questionnaires measure appraisal of a disease, injury, or disability in terms of its biological, psychological, and social disruption. The total score represents the global effect of a disease or physical disability on the biopsychosocial ecology of a person's life. The Illness Index Scales are questionnaires intended to efficiently measure an individual’s appraisal of the impact of a disease, injury, or congenital disorder. The questionnaires assess how a disorder affects a person’s Health-Related Quality of Life (HR-QOL).

Illness Index Scoring and Interpretation

To score the Illness Index add each column (the scoring form provides a means for doing this) and sum the columns. The range of scores will be 20 to 100.

Norms are available for various outpatient groups, allowing for the calculation of Z-scores for each group.

To calculate T-Scores for medical inpatients, the norms from the previous version of the illness index (0-140) have been adjusted to fit the new scale (20-100), assuming the distribution of scores remains consistent between both versions.

Table 5 - Outpatient Norms
Groups	Mean	SD
All outpatients	61.2	17.6
Brain injury	53.5	15.5
CVA	64.45	20.06
Dementia	56.2	16.1
Epilepsy	60.53	21.7
MS	67.21	13.69
Pain	62.5	11.1
Parkinsons	55.83	17.25

High scores represent more disruption from the disorder.

Table 6 - Illness Index score ranges for medical inpatients corresponding to different levels of distress
T-Score	Distress levels	Interpretation
above 65	Extreme Distress	Problems of a physical, psychological, and interpersonal nature exist which the patient may be finding very difficult to cope with. Consider over-reporting. Depression likely.
55 - 64	Moderate Distress	This patient reports somewhat more distress than average. Several aspects of the condition may be especially difficult for this patient to cope with. There may be an increased risk of developing depression or anxiety.
45 - 54	Average Distress	This patient reports an average amount of physical, psychological and social issues from the condition. Some aspects of the patient's condition may be causing problems.
below 44	Below Average Distress	This patient reports less distress than typical. There are either few areas in this patient's life causes distress, or some denial may be present.

These are general ranges and should be adjusted using available group norms.

The norms for medical inpatients from the previous version of the illness index (0-140) have been adjusted to fit the new scale (20-100) under the assumption that the distribution of scores remains consistent between the two versions.

PsyPack can automatically score the Illness Index assessment and prepare corresponding tables and graphs.

Further, PsyPack automatically plots a graph to help you easily track progress over time.

What does Illness Index measure

The purpose of the evaluation is to:

Provide an efficient means of assessing and measuring illness appraisals and HR-QOL
Provide a system of making comparative assessments of four potential sources of HR-QOL perceptions to generate rich clinical qualitative and quantitative information. The questionnaires provide appraisals of illness from the patient, healthcare professional, family member, or friend, and the average group mean for the patient’s disease or injury category when group data is available
Identify specific areas that may require medical education or counseling
Evaluate treatment effectiveness (i.e., program evaluation measure)
Assess the course of a medical or mental health disorder
Provide a tool for assessing HR-QOL for electronic health records

Notes

Since the questionnaire relies on client self-report, all responses should be verified by the clinician, and a definitive diagnosis is made on clinical grounds taking into account how well the client understood the questionnaire, as well as other relevant information from the client.

The Illness Index, Illness Index – Professional, Illness Index – Observer, and Treatment Index are questionnaires intended for patients, healthcare professionals and researchers to examine appraisal of diseases, injuries, or congenital disorders. They should only be used as part of a competent clinical or scientific protocol and should not solely be used for diagnosis.

The Illness Index contains 20 items and uses a 5-point Likert response scale. The minimum score is 20 and the maximum score is 100. The patient completes this scale.

The following table provides the Illness Index item item’s central concept, potentially associated issues, query for details to help the patient elaborate on a response and therapeutic recommendations. The higher the obtained score for an item the more confidence one can have that the individual is indicating distress and HR-QOL issues related to the illness.

Table 7
Item	Concept	Associated Issues	Query for Details	Intervention Recommendations (Rx)
1	Sleep disturbance / Insomnia	Pain. Depression. Anxious rumination. Appetite disturbance.	What is the type of sleep disturbance (falling asleep, maintaining sleep, early awakening)? When was the onset? What exactly is the cause? Is it truly due to the condition, pre-existing, exacerbated by the condition? What has been the course (the sleep disorder stays the same, is it intermittent and fluctuates with pain level)? What is helpful? What treatment has been provided?	Suggest appropriate further evaluation (e.g., sleep evaluation). Consider / try treatments (cognitive-behavioral treatment for insomnia, assess sleep hygiene, relaxation/stress management training, hypnotic medication, anti-depressant).
2	Interpersonal relationship problems	Isolation. Loss of social supports.	What are the specific problems? Who is affected by the patient's condition? What specifically is their reaction? What do family and friends understand about the condition? Are these problems improving or worsening? Is the patient projecting anger over their condition onto others? What solutions have been tried?	Family therapy or counseling
3	Sexual functioning and intimate relationships	Pain, disfigurement, biological dysfunction, depression, anxiety	Determine the nature of the problem (e.g., is it due to a specific physical disorder, a reaction from another person, the patient's own perception of being undesirable, etc.)? What specifically is the reaction of other people, or is this a fear on the patients’ part? What was the onset, duration? Is there a medication side effect that is contributory? What treatment has been attempted?	Identify cause (depression, medication, biological, patient apprehensions) and provide appropriate intervention. Couples counseling
4	Physical distress	Depression, anxiety, litigation	When was the onset? What is the course (chronic, intermittent, progressive, improving)? Location of pain. What exacerbates pain? What makes it better? What is the language patient uses to describe pain? Ascertain patient coping or lack of coping responses. Are there litigation or sick role reinforcements to pain behavior? What do others in the patient’s environment do when the patient complains of pain? What treatment has been attempted? Is the patient pain medication dependent?	Identify issues that can be addressed (e.g., depression) and treat them. Consider pain management psychotherapy
5	Awareness vs denial, somatic preoccupation, sick role adoption	Depression, anxiety, litigation	What are the specific thoughts? How often do they occur? What prompts them? What are the associated feelings? What, if any activities are avoided due to these thoughts? What ideas does the preoccupation give rise to (e.g., fear of dying, probability of recovering, type/nature of recovery, effect on others, ability to work, etc.)? Is the patient pain medication dependent?	Patient counseling for inappropriate, negative or catastrophizing thoughts Consider cognitive psychotherapy
6	Disease conviction.	Hypochondriasis. Depression.	Who doesn’t take the illness seriously enough? How has the patient ascertained this (i.e., what is others reaction: indifference, skepticism, etc.?) What does the patient do to convince others of the impact of the illness? What type of conflict does that create, and between who (family, friends, healthcare professionals). How ill does the patient see self-compared to others?	Investigate underlying relationship problems and/or patient issues. Involve family in counseling, if indicated.
7	Somatic focus.	Depression. Hypochondriasis. Preoccupation.	Have patient describe the symptoms. How does patient identify and classify symptoms? Do symptoms represent one disease or several? What are the causes for each symptom? Which affect the patient most? Onset and frequency of occurrence for the symptoms. Which symptoms seem controllable (by whom and which medications?)	Teach control over controllable symptoms. Help refocus from body.
8	Appetite disturbance.	Depression. Pain. Anxiety. Medication effects. Metabolic disturbance.	Is the poor appetite due directly to disease or other factor (e.g., medication side effect, psychological reaction to condition)? What is the severity? Constant or intermittent? Does eating lead to discomfort? Has the patient made unhealthy nutritional choices? Has there been weight loss, and if so in what period of time?	Determine and treat cause. Nutrition counseling.
9	Illness role. Illness intrusiveness.	Depression. Preoccupation. Secondary gain. Litigation.	What changes has the illness brought about? What would life be like if the patient were not ill? How are others affected? What positive changes might have occurred that sustains the patients complaining (more attention from others, lessened responsibility, work avoidance, monetary gain, etc.)?	Supportive psychotherapy. Cognitive-behavioral therapy (e.g., have patient consider remaining sources of satisfaction, challenge automatic assumptions about the illness' role).
10	Productivity.	Pain. Physical disability. Cognitive changes. Litigation.	In what specific ways has the condition interfered? What standards is the patient using to determine impairment? What are others saying about the patient's productivity? Is the patient resigned to this or actively attempting to compensate? Is litigation present that reinforces disability?	Help patient think about activities that are unimpaired. How can activities that were once enjoyed when healthy be modified? What new activities can be substituted?
11	Fear of dying.	Depression. Anxiety. Delusions. Preoccupation.	What is it about the condition that can cause death? Are these factors controllable by the patient or doctor? What are the realistic "odds" of dying? How does the patient assess the odds – based on what information? How imminent does the patient believe death is? Has the patient come to terms with death? How so? How often does the patient think of death? Is this a preoccupation? Have others told patient they will die or is this a patient assumption not supported by facts?	Supportive psychotherapy. Cognitive therapy and education and death fear is unfounded.
12	Healthcare involvement.	Somatic focus. Hypochondriasis. Attention seeking.	How is "frequent" treatment interpreted by the patient? How much disruption does this cause the patient and others? What are the patient's experiences with the health care system? Does the patient change doctors often? For what reason?	If patient is over-utilizing health care services find ways of lessening dependence
13	Cognitive changes.	Depression. Anxiety. Impairment in work, school or home functioning.	Describe the nature, onset, frequency, severity, of the impairment How much and what type of impairment do these changes bring about? What are the responses of others? Are these changes possibly associated with medication side effects? Are these problems getting better or worse over time? What treatment has been attempted?	Administer neuropsychological tests to determine presence, type, and severity of cognitive impairment. Consult with physician about medication side effects. Counsel regarding ways to manage areas of deficit.
14	Anhedonia.	Depression. Preoccupation. Secondary gain. Litigation.	How does the illness/disability prevent patient from enjoying self? What activities are most affected? Which are unaffected? When/if the disease is in remission, can the patent resume activities and interests (i.e., does a depression account for the anhedonia rather than disease factors)? Onset? Duration? Coping responses?	Diagnose and treat depression if indicated. Help patient focus on unaffected areas and ways of developing and enjoying new pursuits.
15	Helplessness. Control.	Depression. Anhedonia. Healthcare involvement. Locus of control.	What is the patient's interpretation of control? Does the patient believe control should come primarily from healthcare providers or is the patient able to exercise some control? Do external factors play a large part in perception of control (e.g., chance factors, religion, and belief in fate)? What attempts at control have been tried? What is and is not successful? How much dyscontrol can the patient tolerate? Is control increasing or decreasing?	Help patient find aspects of their condition that are controllable. Teach control techniques where applicable (e.g., relaxation training for pain).
16	Dependency.	Role reversal. Secondary gain. Family problems.	Who has taken on the caretaker role in the family? What is their reaction? In what areas is the patient dependent? Is the patient content, resigned, or angry about increased dependency? Is the nature of the dependency consistent with the level of impairment?	Determine if there are benefits resulting from heightened dependency (e.g., attention; financial compensation; avoidance of responsibilities). Is the caregiver able and eager to take over the caretaker role? Is there benefit to them from this arrangement? Does the caretaker assume too much control?
17	Activity level.	Depression. Physical limitations.	What did the patient do before that he/she does not do now? Is the patient restricting activities due to depression or disease-related (e.g., physical problems) factors? Are all activities similarly affected or a select few? Is activity level variable or constant? What helps to increase activity?	If depression is the etiology it should be treated. If activity level is variable determine factors that influence activity level. If some activities remain unaffected can they substitute for others? Can new activities be developed to substitute for affected activities?
18	Worthlessness.	Dependency. Depression. Low self-concept. Family problems.	What is specifically burdensome to others? To whom are they burdensome? What is their response? Does patient believe that she/he will remain this way? What can be done to minimize the burden on others? What areas can the patient take more responsibility for? Are the overall perceptions accurate or related to a depressive cognitive set?	Determine if depression can account for this perception. Treat depression. Evaluate patient's evidence for worthlessness. Consider family counseling.
19	Hopelessness.	Depression. Helplessness.	How has the patient changed? Do people respond differently to the patient now? How so? What areas of functioning can the patient identify that have not been affected? Are the overall perceptions accurate or related to a depressive cognitive set?	Determine if depression can account for this perception. Treat depression.
20	Illness disruption / intrusiveness	Depression. Anxiety. Poor family or social supports. Poor coping skills. Secondary gain. Devastating disease.	What is the patient's past experience with disease or injury that now affects how this condition is viewed? How has the patient coped in the past? What has changed? Who were the models who may have influenced the patient's coping style? What general feelings does the distress create (resignation, overwhelmed, anger, hopeless, depression, motivation to improve)?	Is the patient's overall perceptions accurate or distorted given the answers to the other questions? Treat depression when present. Challenge automatic negative thoughts.

The Illness Index is a snapshot of a patient’s functioning at a point in time. The directions ask for the patient’s appraisal in the past few days since appraisals often change with treatment, the evolution of an acute disorder to a chronic disorder, or as more information about the condition and its impact is assimilated by the patient.

While it is important to encourage the patient to attribute their assessment to a specific condition, this is not always easy to accomplish when there are co-morbid conditions. Nevertheless, ask the patient to try to identify one condition to attribute their ratings. Sometimes, the focus of the assessment can be on multiple issues and the patient can respond in a manner to represent the totality of the illness experience on their HR-QOL. In any event, identify the primary disorder that is being rated on the questionnaire.

The Illness Index can be given at any point during an illness or disability but is especially useful when administered repeatedly (i.e., after an initial period of living with the disorder, during treatment, entering a “chronic” period) to assess the patient's evolving appraisal of HR-QOL issues since appraisal is unlikely to be static over the long term, especially with a chronic disorder.

The interpretation of an Illness Index questionnaire is a three-part procedure.

1. Total Score Comparison: The patient's total score is compared to the norm for a diagnostic group of interest (e.g., general medical inpatients, chronic pain, cardiac, neurologic disease) so that an evaluation can be made to other patients with a similar disorder, or to general medical patients. 2. Item Analysis: Individual items are examined and, when indicated, a clinical follow-up is conducted. 3. Scale Comparisons to Generate Comparative Profiles: The patient's score is compared to the Illness Index-Healthcare Provider and Illness Index–Observer to generate profiles to aid in hypothesis generation.

Illness Index

What is Illness Index

Illness Index Printable PDF

Illness Index Scoring and Interpretation

Sample Report of Illness Index

Domain

What does Illness Index measure

Administration

Type of outcome tool

Assessment modes

Age and eligibility

Estimated time

Notes

Attribution and References