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Biomedical subjects

Lynda C Doward

Publications and source records attributed to Lynda C Doward.

10 recordsLinked to original sources

Measuring the psychosocial consequences of screening.

The last three decades have seen a dramatic rise in the implementation of screening programmes for cancer in industrialised countries. However, in contrast to screening for infectious diseases, most cancer screening programmes only have the potential to reduce mortality; they cannot lower the incidence of cancer in a population. In fact, most cancer screening programmes have been shown to increase the incidence of the disease as a consequence of over-diagnosis. A further dilemma of cancer screening programmes is that they do not distinguish between healthy people and those with disease. Rather, they identify a continuum of disease severity. Consequently, many healthy people who have abnormal screening tests are wrongly diagnosed. Indeed, studies have demonstrated that for each screening-prevented death from cancer, at least 200 false-positive results are given. Therefore, screening has the potential to be harmful as well as beneficial. The psychosocial consequences of false-positive screening results cannot be determined by diagnostic tests or by other technical means. Instead, patient reported outcome measures must be employed. To measure the outcomes of screening accurately and comprehensively patient reported outcome measures have to capture; the nature and extent of the psychosocial consequences and how these change over time. The outcome measures used must have high content validity and their psychometric properties should be determined prior to their use in the specific population. In particular it is important to establish unidimensionality, additivity and item ordering through the application of Item Response Theory.

Diagnostic Errors↗

Defining patient-reported outcomes.

This paper considers and defines the different types of patient-reported outcomes that can be collected in clinical studies. In particular, it argues that quality of life (QoL) is a distinctly different type of outcome from Health-Related Quality of Life (HRQL). QoL is seen as providing an overall assessment of the effect of both illness and its treatment on the patient. In contrast, HRQL assesses issues that are of clinical or societal importance that may or may not cause concern to the patient. Needs-based QoL is defined and it is argued that this approach (the extent to which an individual is able to meet his or her needs) provides a good working indicator of QoL.

Health Services Needs and Demand↗

Integrating patient-reported outcomes.

This paper discusses the relations between different types of patient-reported outcomes that may be collected in clinical studies. Two models are presented that argue that there is a linear relation between the different outcomes. When needs-based quality of life (QoL) is incorporated into the model it is proposed that a two-dimensional relation is more appropriate. The new model is illustrated by data collected using different types of outcome measures. Finally, the different outcomes are related to their purpose in clinical studies.

Clinical Trials as Topic↗

Requirements for quality of life instruments in clinical research.

The ability to produce high quality instruments for the assessment of quality of life has advanced considerably in recent years. As the science progresses it has become clear that certain standards must be met if outcome measures are to be capable of providing useful, reliable, and valid information within the context of clinical studies and trials. This paper specifies what these standards are with particular reference to theoretical basis, practicality, acceptability to respondents, unidimensionality, scaling and psychometric properties, and cultural validity and equivalence. The paper also indicates how failure to achieve such standards results in measures that are inaccurate and insensitive to true changes in outcome.

Clinical Trials as Topic↗

Development of needs-based quality of life instruments.

The methods employed in the development of needs-based quality of life (QoL) instruments have evolved with time as advances have been made in the field of psychometrics and as experience has grown. This paper illustrates the current instrument development methodology with reference to three needs-based QoL measures recently developed for use in dermatology: the Quality of Life Index for Atopic Dermatitis (QoLIAD); the Psoriasis Index of Quality of Life (PSORIQoL); and the Parents' Index of Quality of Life-Atopic Dermatitis (PIQoL-AD).

Dermatology↗

Adapting quality of life instruments.

Due to the international nature of many clinical studies and trials it is often necessary to produce several language versions of specific measures. While it is generally acknowledged that it is necessary to produce versions that are conceptually equivalent, the best method of achieving this is more controversial. It is commonly stated that there is a gold-standard method, which involves forward and backward translation. However, no evidence has been presented to support this view. This paper argues that the "gold-standard" method is difficult to support and describes an alternative method involving dual translation panels that has been used in the production of all adaptations of needs-based quality of life instruments.

Humans↗

Effectiveness of needs-based quality of life instruments.

Several years experience has now been gained in the use of needs-based measures in clinical trials and such use is increasing rapidly. This paper shows how four needs-based quality of life (QoL) instruments have proved effective in determining the benefits of interventions from the patients' perspective in clinical studies and trials. The instruments discussed are; the Quality of Life in Depression Scale (QLDS), the Migraine Specific Quality of Life Scale (MSQoL), the Recurrent Genital Herpes Quality of Life (RGHQoL), and the Quality of life-Assessment in Growth Hormone Deficient Adults (QoL-AGHDA).

Depression↗