PT - JOURNAL ARTICLE AU - Paola Brunori AU - Maria Grazia Celani AU - Angelo Alberto Bignamini AU - Marzia Carlini AU - Rossella Papetti AU - Maria Vittoria Ercolani AU - Luisa Baiocco AU - Gaetano Armato AU - Teresa Anna Cantisani TI - People with amyotrophic lateral sclerosis and their caregivers: what matters most? AID - 10.1136/bmjspcare-2020-002741 DP - 2021 Apr 08 TA - BMJ Supportive & Palliative Care PG - bmjspcare-2020-002741 4099 - http://spcare.bmj.com/content/early/2021/04/07/bmjspcare-2020-002741.short 4100 - http://spcare.bmj.com/content/early/2021/04/07/bmjspcare-2020-002741.full AB - Objectives The aim of this study is to collect the perspectives and values of people affected by amyotrophic lateral sclerosis (ALS) and their carers to offer clinicians, researchers and policymakers aspects which are precious in prioritising future research questions and reshaping care service organisations in a participatory approach.Design and setting Cohort study using ALS Umbria, the electronic database in Italy.Participants Eleven patients and 33 carers who agreed to participate in the study were divided into six focus groups by ‘status’ (patient or carer) and by four severity levels of ‘burden of disease’.Methods A semiquantitative analysis was undertaken. Each recorded group discussion was transcribed into text file and independently read by two psychologists and two ALS specialists to blindly identify needs, emotions and medical issues, which are the key semantic meanings expressed. Any disagreement in interpretation was resolved through consultation among authors.Results Carers pronounced significantly more words related to patient’s disease burden they cared. 40% of subjects expressed the need for ‘assistance’, regardless of the disease burden. ‘Anger’ alone represented more than 1/4 of all expressed emotions and was more common in patients than in carers (73% vs 36%, p=0.077). The most frequent medical issue expressed by 1/3 of participants was ‘difficulty in communication’.Conclusion This study has given voice to the expectations of those affected by the burden of ALS. ‘Welfare assistance’, ‘anger management’ and resolution of ‘difficulties in communication’ represent issues that need to be analysed in a common prioritised research agenda with sensible and shared outcome measures to implement patient-centred medicine.All data relevant to the study are included in the article or uploaded as supplemental information. There is no other information available in addition to all the data included in our article or to the material uploaded as supplemental information.