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K L Haywood, A M Garratt, K Dziedzic and P T Dawes. Patient centered assessment of ankylosing spondylitis-specific health related quality of life: evaluation of the Patient Generated Index. J Rheumatol 2003;30;764-773.

A new approach to the measurement of quality of life — the Patient Generated Index (original article).

Patient centred assessment of quality of life for patients with four common conditions (low back pain, menorrhagia, suspected peptic ulcer, and varicose veins).

How should we evaluate health status? A comparison of three methods in patients presenting with obstructive sleep apnoea – this paper is compares three approaches to the measurement of patient-reported health status which produce summary scales of health status

Patient centered assessment of ankylosing spondylitis-specific health related quality of life: evaluation of the Patient Generated Index (English).

The PGI-AS questionnaire is available by contacting the authors.

The PGI-AS aims to measure individualized health related quality of life in ankylosing spondylitis (AS). Individualized measure of HRQL. To facilitate completion, a disease-specific trigger list of issues considered important by patients is included.

Completion of the instrument comprises 4 stages:

1. The first stage asks the patient to list up to 5 of the most important areas of life affected by AS in blank boxes. The trigger list of important areas commonly mentioned by AS patients and a completed example of the instrument aid completion. Patients may choose not to use the trigger list and identify areas that relate to their own individual experience of disease. Recognizing the role that comorbidity may play in the evaluation of HRQL, patients are given the opportunity to consider the effect of other health problems in a sixth box. The seventh box asks patients to consider non-health related areas of life.
2. In stage 2, patients rate how badly affected they are in each of the areas on a scale of 0 to 10, where 0 represents the worst they can imagine and 10 exactly as they would like to be.
3. Finally, patients “spend points” in stage 3 to reflect their priorities for improvement. Fourteen points can be given to any combination of chosen areas.
4. Multiplying each of the 7 possible ratings (stage 2) by the proportion of points given to that area (stage 3) and summing produces a score from 0 to 10. The score is designed to represent the extent to which reality falls short of expectations in those areas of life in which patients would most value an improvement.

Four stage scoring process as outlined above.