Development of QoL research in dermatology

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A 21-question format was suggested in 1970 to record, in a standard way, the impact of skin disease on QoL (Whitmore, 1970). Other suggestions concerning criteria for assessing the impact of permanent skin impairment (Committee, 1970) and systems for wider assessment of disability (Robinson, 1973) were also proposed. The first dermatology disease-specific instrument, the Psoriasis Disability Index (PDI) (Finlay & Kelly, 1985; Kelly & Finlay, 1987) was initially used to assess the impact of hospital admission on disability in patients with psoriasis and has subsequently been used widely (Lewis & Finlay, 2004). The use of validated, standardised general health measures in dermatology, such as the UK Sickness Impact Profile (Finlay et al., 1990) and the Short Form-36 (SF-36) (Nichol et al., 1996) followed in the early 1990s. Several dermatology disease-specific QoL measures for use in acne, psoriasis, atopic dermatitis, alopecia, leg ulcers and others were described during the 1990s and 2000s. It became clear however in the early 1990s that many of the impacts on QoL experienced by patients were similar, whatever may be the nature of the skin disease. What was required were simple measures that could be used across a wide range of different skin diseases. The Dermatology Life Quality Index (DLQI) was created to meet this need (Finlay & Khan, 1994): this measure has since been used very widely internationally (Lewis & Finlay, 2004). Subsequently several other measures, such as Skindex (Chren et al., 1996), the Freiberg Life Quality Assessment (Augustin et al., 2004), Dermatology-Specific QoL (Anderson & Rajagopolan, 1997) and Dermatology QoL Scales (Morgan et al., 1997) have been described for use across all skin diseases in adults.

It is clearly inappropriate for measures designed for adults to be used in children. The specific needs of different age groups were first addressed in 1995 by the Children's DLQI (CDLQI) (Lewis-Jones & Finlay, 1995). Since then the disease-specific measure, the Infants Dermatitis QoL questionnaire (Lewis-Jones et al., 2001), has been described.

There was recognition of the potential value of being able to measure the secondary impact of skin disease on the family in 1998 by the publication of the disease-specific questionnaire the Family Dermatitis Index (Lawson et al., 1998).

An entirely different way of gaining insight into patients' attitudes to their disease is the use of utility questions. This approach seeks to find out the value that patients place on their disease by asking hypothetical questions relating monetary or time equivalents to changes in disease states. This was first used in acne (Motley & Finlay, 1989), in psoriasis (Finlay & Coles, 1995; Zug et al., 1995), and in atopic dermatitis (Finlay, 1996a), further attention is now being given to this approach (Littenberg et al., 2003; Schiffner et al., 2003).

Although QoL questionnaires are now widely used in dermatology for clinical research and audit, they are not yet regularly used in routine clinical work either as outcome measures or to aid clinical decision-taking. It is necessary for the meaning of QoL scores and the meaning of QoL score change to be easily understood by clinicians before these instruments will be widely helpful. This issue is being addressed (Hongbo et al., 2004) but remains an important research challenge in the development of QoL assessment in dermatology.

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