title: Development of a questionnaire encompassing indicators of distress: a tool for use with women in surgical continuity of care for breast cancer.
abstract: OBJECTIVE
  Women with breast cancer often experience significant distress. Currently, there are no questionnaires aimed at identifying women's unique and possible changing indicators for distress in surgical continuity of care for breast cancer. We developed and tested three questionnaires specifically for this use.
  
  
  METHODS
  We first searched PubMed, CINAHL and PsycINFO to retrieve information on previously described indicators. Next, we conducted a focus group interview with 6 specialised nurses, who have extensive experience about consequences of breast cancer for women in surgical continuity of care. The questionnaire was tested on 18 women scheduled for breast cancer surgery. Subsequently, the women were debriefed to gain knowledge about comprehensibility, readability and relevance of items, and the time needed to complete the questionnaire. After adjustment, the questionnaires were field-tested concomitantly with a clinical study, which both consisted of a survey and an interview study.
  
  
  RESULTS
  Three multi-item questionnaires were developed specific to different time points in surgical continuity of care. The questionnaires share a core of statements divided into seven sub-scales: emotional and physical situation, social condition, sexuality, body image, religion and organisational factors. Besides the core of statements, each questionnaire has different statements depending on the time point of surgical continuity of care when it was to be responded to.
  
  
  CONCLUSIONS
  The questionnaires contain comprehensive items that can identify indicators for distress in individual women taking part in surgical continuity of care. The items were understandable and the time used for filling in the questionnaires was reasonable.
authors.affiliation: Department of Breast Surgery, Aalborg University Hospital, Sdr. Skovvej 3, 9000 Aalborg, Denmark. Electronic address: lojo@rn.dk.
authors.forename: L
authors.initials: L
authors.lastname: Jørgensen
authors.affiliation: Department of Breast Surgery, Aalborg University Hospital, Sdr. Skovvej 3, 9000 Aalborg, Denmark. Electronic address: jpg@dadlnet.dk.
authors.forename: J P
authors.initials: JP
authors.lastname: Garne
authors.affiliation: Department of Epidemiology, Institute of Clinical Medicine, Aarhus University Hospital, Olof Palmes Allé 43-45, 8200 Aarhus N, Denmark. Electronic address: mette.soegaard@ki.au.dk.
authors.forename: M
authors.initials: M
authors.lastname: Søgaard
authors.affiliation: Department of Clinical Medicine, Aalborg University, Clinical Nursing Research Unit, Aalborg University Hospital, Sdr. Skovvej 15, 9000 Aalborg, Denmark. Electronic address: bisl@rn.dk.
authors.forename: B S
authors.initials: BS
authors.lastname: Laursen
mesh_terms: D001828:Body Image; D001943:Breast Neoplasms / Q000523:psychology* / Q000601:surgery*; D003266:Continuity of Patient Care; D003718:Denmark; D004644:Emotions; D005260:Female; D017144:Focus Groups; D006801:Humans; D008408:Mastectomy; D010865:Pilot Projects; D015203:Reproducibility of Results; D012944:Social Support; D013315:Stress, Psychological / Q000175:diagnosis* / Q000209:etiology* / Q000523:psychology; D011795:Surveys and Questionnaires; D063189:Symptom Assessment
keywords: Breast cancer; Distress; Person perspective; Psychosocial problems; Questionnaire; Surgical continuity of care