Windsor, Dallas Joy; (2001) Measuring the quality of life of patients in ambulatory care, in relation to their medical condition or illness. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Many generic measures with standardised items, notably the SF-36 and its derivatives, are available for use in both healthy and patient populations. By definition, these focus on general health status rather than a patient's condition. Condition specific and individual quality of life instruments, for example, the PGI (Patient Generated Index) and SEIQoL (Schedule for the Evaluation of Individual Quality of Life) have been developed. The individualised measures take into account the individual nature of the concepts (health related quality of life and quality of life respectively) being measured. They are suitable for interview administration and the items are areas of life nominated by respondents.The aim of this research was to develop a new measure based on items of known importance to people in relation to their medical conditions or illnesses, which would be valid, reliable and manageable when administered in busy clinical settings. The focus was thus on the patient's condition rather than general health. The PIMS (People's Impact on Life Scale) instrument was intended to be sufficiently acceptable and comprehensible for self-completion. Emphasis was placed on sensitivity to patients least affected by their condition, and relevance to people of all ages. The instrument was based on a model of the impact on life incorporating limitation and importance. The concept to be measured was the impact on life of a condition.Triangulated evidence was gathered from qualitative and quantitative research. Studies in three settings were carried out of, older people in the community (concerning health or a medical condition), hospital rehabilitation clinic patients (concerning cardiac conditions) and general practice patients (concerning the presenting condition). A panel of experts evaluated the questionnaire and semi-structured interviews were conducted with selected participants in the general practice study.The PIMS items were scaled with a panel of judges using Thurstone's comparative methods. For simplicity of scoring, and with due regard to the psychometric properties of scales derived from alternative scaling methods, the items were not weighted.The reliability of the PIMS was good and the scale was closely associated with the concept being measured in comparison with the SF-36, SF-12 and HSQ-12. Further development work and testing is needed to refine the item content, modify the instrument's structure, clarify instruction wording and develop a module of items suitable for older people.

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