EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis.

Background and Purpose: Patients with severe, progressive multiple sclerosis (MS) have complex physical and psychosocial needs, typically over several years. Few treatment options are available to prevent or delay further clinical worsening in this population. The objective was to develop an evidence-based clinical practice guideline for the palliative care of patients with severe, progressive MS. Methods: This guideline was developed using the Grading of Recommendations Assessment, Development and Evaluation methodology. Formulation of the clinical questions was performed in the Patients-Intervention-Comparator-Outcome format, involving patients, carers and healthcare professionals (HPs). No uniform definition of severe MS exists: in this guideline, constant bilateral support required to walk 20 m without resting (Expanded Disability Status Scale score >6.0) or higher disability is referred to. When evidence was lacking for this population, recommendations were formulated using indirect evidence or good practice statements were devised. Results: Ten clinical questions were formulated. They encompassed general and specialist palliative care, advance care planning, discussing with HPs the patient's wish to hasten death, symptom management, multidisciplinary rehabilitation, interventions for caregivers and interventions for HPs. A total of 34 recommendations (33 weak, 1 strong) and seven good practice statements were devised. Conclusions: The provision of home-based palliative care (either general or specialist) is recommended with weak strength for patients with severe, progressive MS. Further research on the integration of palliative care and MS care is needed. Areas that currently lack evidence of efficacy in this population include advance care planning, the management of symptoms such as fatigue and mood problems, and interventions for caregivers and HPs.

Emotional responses of children and adolescents to parents with multiple sclerosis.

The effect of a chronic illness of one parent on children is determined by a complicated interaction of various emotional components. Our focus was on the children's and adolescent's emotional reactions and feelings towards their multiple sclerosis (MS)-affected parents, including: degree of responsibility, obligation and concern, yielding behaviour and active protection, fear and anxiety related to the state of illness, their sense of burden in connection with household tasks and errands, and anger. Fifty-six children, ages 10-18, each having a parent with MS, were examined. The results were compared to a control group of 156 age-matched children with healthy parents. Feelings were examined by means of a questionnaire previously constructed by us. We found that children of parents with MS felt more responsibility and obligation than children of healthy parents. They also exhibited more yielding behaviour, more fear and anxiety related to states of illness, a greater sense of burden and a greater degree of anger. We consider the interaction between the sex of the parent and the sex of the child in connection with these feelings and discuss the implications of the 'parental child' role of these children.