Title : Investigation of unpleasant sensation perceptions amongst patients affected by Amyotrophic Lateral Sclerosis (ALS), during clinical trials procedures
Introduction: ALS diagnosis is considered a traumatic life event for both the patient and their next-of-kin/ carers, due to the lack of treatment for this degenerative disease. Clinical Trials can offer pioneering treatment to reduce the impact of the disease and improve future treatments worldwide. Research protocols for these treatments, may involve routine diagnostic and/or therapeutic procedures which the patients may be already aware of, and therefore expecting specific sensations. These could compromise participation or drop-out rate. Despite everything, participation in a clinical trial can guarantee continuity of care also thanks to the execution of these same procedures, through preferential access compared to other patients.
Aim: To investigate the perception of unpleasant sensations during procedures in clinical trials of ALS patients.
Methods: Descriptive phenomenological study and data will be analysed according to Sundler's method Expected Results: The identification of painful/unconformable procedures will help patients’ retention in ALS clinical trials and improve patients' experience and mental health, while increasing adherence and reducing dropouts. Furthermore, this could enhance adherence to the clinical trial pathway, through the reduction of anxiety states generated by annoying/painful procedures.
Conclusion: This study could holistically evaluate the quality of care and the taking charge of patient problems by the nurses and medical team. Implementing strategies, multidisciplinary care, and assistance.
This study could provide information for future studies to create an ALS Clinical Trials multiple-retention-factors adherence scale. Moreover, the study could help create and implement an ALS-specific pain scale accounting for its impact on daily activities, aiding an interdisciplinary approach of pain management.
Audience Take Away Notes:
- Analysing what type of pain/discomfort frightens patients during diagnostic and/or therapeutic procedures in ALS clinical trials
- To promote the development of soft skills and competences that help health professionals to assess both pain in ALS patients and the management of patient-centred pathways
- Formative cue to expand and share with other colleagues’ research or teaching in order to obtain more information and possible hints for future guidelines on the topic, such as in other medical disciplines/fields; furthermore it could be used as starting point to work on any specific pain assessment scales different pathologies.
- Provide data to implement effective therapy and offer constant patients support throughout ALS specific and needed procedures. Evaluate if this support could influence adherence rate of ALS patients to conduct clinical trials as required
- Identify the best pain management strategies and compliance techniques to address ALS, not merely in clinical trials. Provide the best individualised care for ALS patients improving their quality of life and mental state, as well as those of the caregivers