title: The experience of patients with early-stage testicular cancer during the transition from active treatment to follow-up surveillance.
abstract: OBJECTIVE
  To gain a better understanding of the experiences of patients with early-stage testicular cancer during the transition from active cancer treatment to follow-up care.
  
  
  METHODS
  Cross-sectional multimethod study (questionnaires, focus groups, and telephone interviews) to describe experiences of patients with testicular cancer transitioning to survivorship. Questionnaire package included standardized measures of survivorship knowledge, feeling of preparedness, health-related distress, and perspectives on care coordination. Standard descriptive statistics and Mann-Whitney tests to examine associations between all outcomes based on demographic and clinical variables were performed. Qualitative results (focus groups and interviews) were analyzed with qualitative content analysis.
  
  
  RESULTS
  Based on quantitative data (n = 90) and qualitative analyses (n = 13), participants had relatively high survivorship knowledge, most testicular cancer survivors were not provided with any formal transition planning or documentation, and a substantial minority felt unprepared to cope with the aftereffects of testicular cancer and the posttreatment survivorship phase. Younger men had lower survivorship knowledge, feelings of preparedness, and continuity of care scores and were less likely to report having received any self-management tools and education or information of patient resources. Participants reported that they did not know what to expect physically or emotionally after treatment ended and many continued to be frustrated and worried about their health problems. They expressed the need for reliable and personalized resources on what to expect after treatment and more formal transition care planning.
  
  
  CONCLUSIONS
  Patients with testicular cancer continue to struggle in their transition to posttreatment survivorship. Quality of care must emphasize a shift from a purely disease-focused approach to a wellness-centered approach that provides coordinated, patient-centered, and comprehensive care to optimize quality of life for these survivors.
authors.affiliation: Cancer Rehabilitation and Survivorship Program, University Health Network, Toronto, Ontario, Canada.
authors.forename: Abra H
authors.initials: AH
authors.lastname: Shen
authors.affiliation: Oncology Nursing, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.
authors.forename: Doris
authors.initials: D
authors.lastname: Howell
authors.affiliation: Cancer Rehabilitation and Survivorship Program, University Health Network, Toronto, Ontario, Canada.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Edwards
authors.affiliation: Department of Radiation Oncology, Princess Margaret Cancer Centre, University health Network, Toronto, Ontario, Canada.
authors.forename: Padraig
authors.initials: P
authors.lastname: Warde
authors.affiliation: Department of Surgical Oncology, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.
authors.forename: Andrew
authors.initials: A
authors.lastname: Matthew
authors.affiliation: Cancer Rehabilitation and Survivorship Program, University Health Network, Toronto, Ontario, Canada. Electronic address: jennifer.jones@uhn.ca.
authors.forename: Jennifer M
authors.initials: JM
authors.lastname: Jones
mesh_terms: D000293:Adolescent; D000328:Adult; D003430:Cross-Sectional Studies; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D009367:Neoplasm Staging; D010360:Patient Transfer; D011788:Quality of Life; D017741:Survivors; D013736:Testicular Neoplasms / Q000473:pathology / Q000523:psychology* / Q000628:therapy*; D055815:Young Adult
keywords: Health care delivery; Supportive care; Survivorship; Testicular cancer