title: Symptoms, unmet needs, psychological well-being and health status in survivors of prostate cancer: implications for redesigning follow-up.
abstract: To explore ongoing symptoms, unmet needs, psychological wellbeing, self-efficacy and overall health status in survivors of prostate cancer.
  
  
  
  An invitation to participate in a postal questionnaire survey was sent to 546 men, diagnosed with prostate cancer 9-24 months previously at two UK cancer centres. The study group comprised men who had been subject to a range of treatments: surgery, radiotherapy, hormone therapy and active surveillance. The questionnaire included measures of prostate-related quality of life (Expanded Prostate cancer Index Composite 26-item version, EPIC-26); unmet needs (Supportive Care Needs Survey 34-item version, SCNS-SF34); anxiety and depression (Hospital Anxiety and Depression Scale, HADS), self-efficacy (modified Self-efficacy Scale), health status (EuroQol 5D, EQ-5D) and satisfaction with care (questions developed for this study). A single reminder was sent to non-responders after 3 weeks. Data were analysed by age, co-morbidities, and treatment group.
  
  
  
  In all, 316 men completed questionnaires (64.1% response rate). Overall satisfaction with follow-up care was high, but was lower for psychosocial than physical aspects of care. Urinary, bowel, and sexual functioning was reported as a moderate/big problem in the last month for 15.2% (n = 48), 5.1% (n = 16), and 36.5% (n = 105) men, respectively. The most commonly reported moderate/high unmet needs related to changes in sexual feelings/relationships, managing fear of recurrence/uncertainty, and concerns about the worries of significant others. It was found that 17% of men (51/307) reported potentially moderate-to-severe levels of anxiety and 10.2% (32/308) reported moderate-to-severe levels of depression. The presence of problematic side-effects was associated with higher psychological morbidity, poorer self-efficacy, greater unmet needs, and poorer overall health status.
  
  
  
  While some men report relatively few problems after prostate cancer treatment, this study highlights important physical and psycho-social issues for a significant minority of survivors of prostate cancer. Strategies for identifying those men with on-going problems, alongside new interventions and models of care, tailored to individual needs, are needed to improve quality of life.
authors.affiliation: Department of Clinical Health Care, Oxford Brookes University, Oxford, UK.
authors.forename: Eila
authors.initials: E
authors.lastname: Watson
authors.affiliation: Nuffield Department of Primary Health Care, University of Oxford, Oxford, UK.
authors.forename: Bethany
authors.initials: B
authors.lastname: Shinkins
authors.affiliation: Department of Surgical Oncology, Cambridge University Hospitals Trust, Cambridge, UK.
authors.forename: Emma
authors.initials: E
authors.lastname: Frith
authors.affiliation: Department of Surgical Oncology, Cambridge University Hospitals Trust, Cambridge, UK.
authors.forename: David
authors.initials: D
authors.lastname: Neal
authors.affiliation: Nuffield Department of Surgical Sciences, University of Oxford, Oxford, UK.
authors.forename: Freddie
authors.initials: F
authors.lastname: Hamdy
authors.affiliation: Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.
authors.forename: Fiona
authors.initials: F
authors.lastname: Walter
authors.affiliation: Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK.
authors.forename: David
authors.initials: D
authors.lastname: Weller
authors.affiliation: North Wales Centre for Primary Care Research, Bangor University, Bangor, UK.
authors.forename: Clare
authors.initials: C
authors.lastname: Wilkinson
authors.affiliation: Division of Health and Social Care, University of Surrey, Surrey, UK.
authors.forename: Sara
authors.initials: S
authors.lastname: Faithfull
authors.affiliation: Health Economics Research Centre, University of Oxford, Oxford, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Wolstenholme
authors.affiliation: Nuffield Department of Surgical Sciences, University of Oxford, Oxford, UK.
authors.forename: Prasanna
authors.initials: P
authors.lastname: Sooriakumaran
authors.affiliation: Department of Surgical Oncology, Cambridge University Hospitals Trust, Cambridge, UK.
authors.forename: Christof
authors.initials: C
authors.lastname: Kastner
authors.affiliation: Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK.
authors.forename: Christine
authors.initials: C
authors.lastname: Campbell
authors.affiliation: North Wales Centre for Primary Care Research, Bangor University, Bangor, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Neal
authors.affiliation: Service User Representatives, Resident in UK.
authors.forename: Hugh
authors.initials: H
authors.lastname: Butcher
authors.affiliation: Service User Representatives, Resident in UK.
authors.forename: Mike
authors.initials: M
authors.lastname: Matthews
authors.affiliation: Nuffield Department of Primary Health Care, University of Oxford, Oxford, UK.
authors.forename: Rafael
authors.initials: R
authors.lastname: Perera
authors.affiliation: Nuffield Department of Primary Health Care, University of Oxford, Oxford, UK.
authors.forename: Peter
authors.initials: P
authors.lastname: Rose
mesh_terms: D000203:Activities of Daily Living; D000359:Aftercare; D000368:Aged; D000369:Aged, 80 and over; D005242:Fecal Incontinence / Q000523:psychology; D006304:Health Status; D006801:Humans; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D020380:Needs Assessment; D017060:Patient Satisfaction; D010865:Pilot Projects; D011446:Prospective Studies; D011471:Prostatic Neoplasms / Q000523:psychology* / Q000628:therapy; D011788:Quality of Life / Q000523:psychology*; D020377:Self Efficacy; D057566:Self Report; D012735:Sexual Dysfunction, Physiological / Q000523:psychology; D012944:Social Support; D017741:Survivors / Q000523:psychology*; D014549:Urinary Incontinence / Q000523:psychology
keywords: follow-up care; primary care; prostate cancer; quality of life; survivors