![]() ![]() There is a debate which QoL measure is truly patient centered. QoL is increasingly used to supplement objective clinical or biological measures to evaluate health care provision and interventions in research and clinical trials ( 8). It is therefore not simply a state of physical integrity ( 7). ![]() QoL is the general well-being of a person and includes physical (individuals' perception of their physical state), psychological (individuals' perception of their cognitive and affective state) and social dimensions (individuals' perception of the interpersonal relationships and social roles in their life). long-term survivors) and the use of different QoL definitions. This discrepancy is partly attributed to selection of patient subgroups (e.g., shortly after diagnosis vs. There have been contradictory reports whether QoL is lost in the course of physical decline ( 4– 6). Quality of life (QoL) is one possible measure of good psychosocial adaptation to disability such as ALS, similarly to depression ( 3). There are different ways of how patients cope with these major changes. The communication of the diagnosis is a major stressful event for patients, families and caretakers and thus most challenging with regard to medical counseling ( 2). There is no cure for ALS and care focuses on maintaining functional ability and providing palliative and symptomatic interventions to relieve the burden of symptoms ( 1). If life-sustaining measures such as invasive ventilation are taken, patients may terminate in a locked-in state with a clear mind in a paralyzed body. On average, patients die within 3 years after symptom onset. ![]() ![]() This is a JPND-funded work to summarize findings of the project NEEDSinALS ( which highlights subjective perspectives and preferences in medical decision making in ALS.Īmyotrophic lateral sclerosis (ALS) is among the most devastating neurological conditions: patients lose the ability to speak, to walk and eventually to breathe. There are intrinsic and extrinsic factors that have been shown to successfully facilitate and secure QoL in ALS which will be reviewed in the following article following the four ethical principles (1) Beneficence, (2) Non-maleficence, (3) Autonomy and (4) Justice, which are regarded as key elements of patient centered medical care according to Beauchamp and Childress. Thus, there is no fatalistic link of loss of QoL when physical health declines. Current data provide extensive evidence that psychosocial adaptation in ALS is possible, indicated by a satisfactory QoL. Some people without neurodegenerative conditions believe that physical decline is incompatible with satisfactory QoL. Further, the definition of QoL and the question whether survival in this severe condition is compatible with a good QoL is a matter of subjective and culture-specific debate. This is a major challenge in severe medical conditions with a prognosis such as amyotrophic lateral sclerosis (ALS). It is one of the primary goals of medical care to secure good quality of life (QoL) while prolonging survival.
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