title: A study to explore the patient's experience of peritoneal surface malignancies: pseudomyxoma peritonei.
abstract: Pseudomyxoma peritonei (PMP) is a rare tumour originating from the appendix and producing extensive mucus accumulation within the abdomen and pelvis. Since UK government policy reinforces the importance of involving patients in the delivery of healthcare, it is essential to explore patients views so that service development can be fully responsive to the patients need. The primary objective of this study was to explore the impact of PMP on the lives of patients. The secondary objectives were to explore the sources of psychological support for patients, the symptoms experienced and their information concerns. In-depth interviews were conducted with a purposive sample of 13 patients. The interviews were tape recorded, with permission, transcribed in full and analysed for content and emerging themes. The emergent themes included significant uncertainty about the diagnosis and treatment of this rare condition. The difficulties associated with confirming an initial diagnosis and living with an uncertain prognosis were highlighted. Patients' choice and access to support by a specialist team were important themes. The data highlighted the particular needs of this under-researched patient group and provided evidence to further develop patient support, particularly using the Internet.
authors.affiliation: Peritoneal Tumour Service, Christie Hospital NHS Foundation Trust, Withington, Manchester M20 4BX, UK. G.Witham@mmu.ac.uk
authors.forename: G
authors.initials: G
authors.lastname: Witham
authors.forename: C
authors.initials: C
authors.lastname: Willard
authors.forename: B
authors.initials: B
authors.lastname: Ryan-Woolly
authors.forename: S T
authors.initials: ST
authors.lastname: O'Dwyer
mesh_terms: D000223:Adaptation, Psychological; D001294:Attitude to Health; D002755:Choice Behavior; D017281:Cost of Illness; D005260:Female; D006297:Health Services Accessibility; D006301:Health Services Needs and Demand; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D015404:Nursing Methodology Research; D010353:Patient Education as Topic; D018802:Patient-Centered Care; D010534:Peritoneal Neoplasms / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy; D011379:Prognosis; D011553:Pseudomyxoma Peritonei / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy; D036301:Qualitative Research; D035583:Rare Diseases; D012657:Self-Help Groups; D012944:Social Support; D011795:Surveys and Questionnaires; D035501:Uncertainty; D006113:United Kingdom / Q000453:epidemiology