title: Meeting the ongoing needs of survivors of rarer cancer.
abstract: With more treatment options for people with cancer long-term survivorship is increasing. Physical and psycho-social needs have been identified in survivors of common cancers but very little has been written about the needs of patients with rarer cancers. Patients treated for rarer cancer are discharged to the primary health care team (PHCT), yet little is known about the assessment, management and support of these patients. Thirty-nine semi-structured interviews were conducted with (1) survivors of and (2) people living with rarer cancer (i.e. <5% of cancer burden). Participants were asked about physical and psycho-social needs and service provision. Data were analysed thematically using Atlas ti. Contrary to expectation, disease-free survivors of rarer cancer were indistinguishable from those living with disease in their ability to cope, and range of symptoms and needs. Participants with a clinical nurse specialist (CNS) reported that they were well supported on their return home and their needs were met. Participants without a CNS were referred to the PHCT who were unsure how to assess or support them. These participants felt abandoned. There is a need for the rehabilitation of patients with rarer cancer to strengthen individual coping mechanisms, and family and social support. Although there are resource and training implications, this is a potential role for the PHCT, district nursing in particular, and may lead to more focused and targeted provision of services.
authors.affiliation: Department of Nursing Midwifery and Social Work, University of Manchester, Oxford Road, Manchester M13 9PL, UK. jane.griffiths@manchester.ac.uk
authors.forename: Jane
authors.initials: J
authors.lastname: Griffiths
authors.forename: Carole
authors.initials: C
authors.lastname: Willard
authors.forename: Andrea
authors.initials: A
authors.lastname: Burgess
authors.forename: Ziv
authors.initials: Z
authors.lastname: Amir
authors.forename: Karen
authors.initials: K
authors.lastname: Luker
mesh_terms: D000223:Adaptation, Psychological; D000359:Aftercare / Q000458:organization & administration; D001294:Attitude to Health; D003266:Continuity of Patient Care / Q000458:organization & administration; D018572:Disease-Free Survival; D004739:England; D005190:Family / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D020380:Needs Assessment / Q000458:organization & administration; D009369:Neoplasms / Q000517:prevention & control / Q000523:psychology*; D009720:Nurse Clinicians / Q000458:organization & administration; D024802:Nurse's Role; D015404:Nursing Methodology Research; D009859:Oncology Nursing / Q000458:organization & administration; D010351:Patient Discharge; D011320:Primary Health Care / Q000458:organization & administration; D011637:Public Health Nursing / Q000458:organization & administration; D036301:Qualitative Research; D035583:Rare Diseases / Q000517:prevention & control / Q000523:psychology*; D012944:Social Support; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*