Rousseau MC., Baumstarck K., Billette de Villemeur T., Auquier P.
Intractable & rare diseases research 2016, 5(2):83-89. doi: 10.5582/irdr.2016.01017.
Mediation/Education :
Pathologies characterized by severe motor impairment have a major impact on the quality of life of patients and their families. The quality of life parameter appears to be an interesting indicator of these people’s well-being. However, its measurement, made complex by the extent of the motor impairment, is often carried out from the point of view of caregivers, which encourages an underestimation of the patient’s quality of life. It therefore seems essential to rely on a quality of life assessment provided by the patient himself, particularly in the context of ethical decisions relating to the end of life.
None of the specific scales developed for a particular pathology or patient sub-group appear to be sufficiently adapted to severe motor impairment. The development of such a tool, a major challenge in this population, must take into account several difficulties inherent to the characteristics of the patients: 1) the development of questionnaires in digital format is more complex, 2) adapting the questionnaire format (length, level of difficulty) is more difficult, 3) risk of creating a nocebo effect (negative effect).
Interpreting quality of life measures is also a major challenge, given the absence of standards to refer to, and the predominant role of psychological factors over physical parameters in the evolution of quality of life. Patients can thus modify their representation of quality of life and the importance of factors deemed to be priorities, encouraging over- or under-estimation of the measure over time.
Identifying the factors that determine quality of life, as well as those that predict its evolution in the short and medium term, is a major challenge in order to identify subjects at high risk of worsening, and to propose appropriate treatments.
The experience of caregivers, largely under-exploited despite their fundamental role in the delivery of day-to-day care, must be taken into account in order to target appropriate responses (technical or human aids, adapted equipment, etc.) and thus improve their quality of life.
Assessing the quality of life of patients with severe motor impairment and their caregivers is therefore a challenge with major ethical implications. Its longitudinal measurement, using appropriate tools, should encourage the development of a social health policy.