Living with Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) syndrome: a case study of healthcare experiences and quality of life.
Jessica TwiggAbigail MethleyTim LavinGemma DickinsonAlistair TeagerPublished in: Disability and rehabilitation (2019)
All Multidisciplinary Team (MDT) interventions for Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) Syndrome should be person-centred and focus on identity and personal strengths. Further research and service development should be completed to increase awareness and understanding of Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) Syndrome, promote patient wellbeing, reduce psychological distress, and facilitate engagement in neurorehabilitation.Implications for rehabilitationPolyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) Syndrome is a rare condition and incorrect diagnoses and treatment have a significant impact on patients' physical and psychological wellbeing.Patients and families require support through person-centred care and good communication and continuity of care between multiple services.Multi-disciplinary interventions which focus on identity and strengths were beneficial for the participant in this case study.Further research and education are needed to increase knowledge on patient experiences of Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) Syndrome and continue to improve service provision.
Keyphrases
- healthcare
- case report
- mental health
- end stage renal disease
- soft tissue
- palliative care
- newly diagnosed
- quality improvement
- ejection fraction
- physical activity
- wound healing
- chronic kidney disease
- multiple myeloma
- primary care
- prognostic factors
- peritoneal dialysis
- social media
- sleep quality
- replacement therapy
- smoking cessation
- health information
- pain management