The burden of suffering that accompanies disease must always be taken seriously, even if in the present economic climate governments and authorities are more focused on the costs of healthcare provision and the loss of productivity through illness. In dermatology, practically every skin disease can cause disfigurement and lead to a degree of psychological distress and/or impairment of social activity. Thus, patient quality of life (QoL) is an essential consideration in the clinical care of dermatology patients.¹

The European Academy of Dermatology and Venereology (EADV) Task Force on QoL recently published a comprehensive review of different types of QoL instruments that have been used to assess QoL in patients with atopic dermatitis (AD).² No less than 15 generic instruments, 13 dermatology-specific instruments and 11 AD-specific instruments were identified. Broad recommendations for their use in clinical research and clinical practice were provided. However, in the absence of any guidance based on their individual relative merits, for the practising physician there are surely too many instruments to choose from.³

Exactly how useful some of these QoL instruments are in everyday practice is debatable. During their development, open-ended qualitative research with patients is a necessity in order to identify a comprehensive set of items (i.e. questions) that authentically reflect patients experiences in relation to the concept of interest (the outcome being measured). Unfortunately, often this is not done, raising concerns over the content validity of some QoL instruments.⁴ Therefore, it is crucial for anyone planning to use a QoL instrument to examine the content closely and assess whether what it is measuring matters to their patient population. Also concerning is the use of generic measures, such as the SF-36 or EQ-5D, which fail to measure a range of concepts important to patients with skin conditions (e.g. skin appearance and/or skin symptoms).

It has been contended that “Although dermatologists think we have insight into the patient’s perspective, in reality, we are not that good at understanding it”.⁵ The development and use of ‘authentic’ dermatology-specific patient-reported outcome (PRO) measures that are carefully conceptualised and psychometrically sound may enable dermatologists to better understand their patients’ perspectives and tailor clinical decisions accordingly.⁴ Minimum standards for PRO measures have been recommended by the International Society for Quality of Life Research (ISOQOL).⁶

A PRO is defined by the US Food and Drug Administration as “any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else”.⁷ The measurement of PROs is increasingly seen as an important part of routine healthcare provision, and in dermatology can provide clinicians with invaluable insights into a patient’s perception of how their skin disease affects them personally. The robust development and validation of dermatology-specific PROs is seen as a priority. Healthcare systems and providers around the world are incorporating the patient’s voice into outcome assessments using PRO instruments.^8-10 Ultimately, their use has the potential to improve day-to-day patient care.⁴

Dominique du Crest

Acknowledgements:

The author would like to thank Professor Anne Klassen, Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada for her scientific and editorial input during the development of this article, and Nicholas Terry for his assistance in the development and writing of this article.

References:

1. Ring J. Quality of life – an essential parameter for dermatology. J Eur Acad Dermatol Venereol. 2017;31(4):573.
2. Chernyshov PV, et al. Quality of life measurement in atopic dermatitis. Position paper of the European Academy of Dermatology and Venereology (EADV) Task Force on quality of life. J Eur Acad Dermatol Venereol. 2017;31(4):576-93.
3. Rzany B. Too many instruments for measuring quality of life in atopic dermatitis. J Eur Acad Dermatol Venereol. 2017;31(4):574.
4. Apfelbacher CJ, Nelson PA. Patient-reported outcome measures and qualitative research in dermatology: the quest for authenticity. Br J Dermatol. 2017;176(2):285-7.
5. Finlay AY. Patient-reported outcome measures in psoriasis: assessing the assessments. Br J Dermatol. 2015;172(5):1178-9.
6. Reeve BB, et al. ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Qual Life Res. 2013;22(8):1889-905.
7. US Food and Drug Administration. Guidance for industry. Patient-reported outcome measures: use in medical product development to support labeling claims. December 2009. Available from: https://www.fda.gov/downloads/drugs/guidances/ucm193282.pdf. Accessed May 2017.
8. Black N. Patient reported outcome measures could help transform healthcare. BMJ 2013;346:f167.
9. Nelson EC, et al. Patient reported outcome measures in practice. BMJ 2015:350:g7818.
10. Williams K, et al. Patient-reported outcome measures: literature review. Sydney: ACSQHC; 2016.