What surgeons tell patients and what patients want to know before major cancer surgery: a qualitative study.

BACKGROUND: The information surgeons impart to patients and information patients want about surgery for cancer is important but rarely examined. This study explored information provided by surgeons and patient preferences for information in consultations in which surgery for oesophageal cancer surgery was discussed. METHODS: Pre-operation consultations in which oesophagectomy was discussed were studied in three United Kingdom hospitals and patients were subsequently interviewed. Consultations and interviews were audio-recorded, transcribed in full and anonymized. Interviews elicited views about the information provided by surgeons and patients' preferences for information. Thematic analysis of consultation-interview pairs was used to investigate similarities and differences in the information provided by surgeons and desired by patients. RESULTS: Fifty two audio-recordings from 31 patients and 7 surgeons were obtained (25 consultations and 27 patient interviews). Six consultations were not recorded because of equipment failure and four patients declined an interview. Surgeons all provided consistent, extensive information on technical operative details and in-hospital surgical risks. Consultations rarely included discussion of the longer-term outcomes of surgery. Whilst patients accepted that information about surgery and risks was necessary, they really wanted details about long-term issues including recovery, impact on quality of life and survival. CONCLUSIONS: This study demonstrated a need for surgeons to provide information of importance to patients concerning the longer term outcomes of surgery. It is proposed that "core information sets" are developed, based on surgeons' and patients' views, to use as a minimum in consultations to initiate discussion and meet information needs prior to cancer surgery.

Parents' perspectives on centralized cleft services for children: the development of a DCE questionnaire.

OBJECTIVE: Incorporating user's perspectives in healthcare delivery is important. Simple questionnaires may not capture these as well as a discrete choice experiment (DCE) which enables the exploration of users' trade-offs between different service attributes. Qualitative methods are increasingly used to improve a DCE's face validity, but few studies adequately describe them. This paper describes the qualitative investigations in the development of a DCE questionnaire to elicit parents' perspectives on centralized services for children with cleft lip and palate. METHODS: Semi-structured telephone interviews were conducted with 16 parents from across the UK, except Wales. Data analysis was carried out by the constant comparative method. RESULTS: Five attributes and their levels were inductively identified: usefulness and amount of information (four levels); staff attitude at cleft centres (two levels); continuity of care (two levels); personal costs of attending appointments (four levels); and cleft centres facilities (two levels). An unexpected finding was that parents' sense of responsibility towards their child made a 'willingness-to-travel' attribute unacceptable to them, but they were receptive to a 'willingness-to-pay' attribute. CONCLUSION: Using qualitative methods with service users in attribute development for a DCE helps to uncover issues that may not be apparent to researchers or health service staff.

Pathways Through Care for Long-Term Pain After Knee Replacement: A Qualitative Study With Healthcare Professionals.

BACKGROUND: Chronic pain after total knee replacement is experienced by around 20% of patients in the UK. Ensuring that services are designed to best meet the needs of patients requires a foundation of empirical work. The present study sought to describe healthcare professionals' experiences and views on the assessment and care of patients with chronic pain after total knee replacement. METHODS: We undertook a qualitative focus group study with healthcare professionals at a large acute NHS hospital trust, all of whom came into contact with patients experiencing chronic pain after total knee replacement. Snowball sampling was used to recruit participants to four focus groups. Transcripts of the audio-recorded groups were analysed thematically. RESULTS: Eighteen healthcare professionals from a range of disciplines took part. Participants found it difficult to conceptualize chronic pain; its character varied between patients, and its origins and progress were often ambiguous. In the first of two superordinate themes, participants recognized chronic pain as a possible outcome of total knee replacement, but felt that patients may be unprepared for this. In the second superordinate theme, apparent complexities in assessing and managing patients with chronic pain after total knee replacement and a lack of explicit access points meant that healthcare professionals often saw no clear way to help patients. Participants agreed that a multidisciplinary approach that adapts to individual patient context was an ideal approach. CONCLUSION: The present study illustrated potential obstacles to 'best practice' in the management of chronic pain after total knee replacement, identified through research with healthcare professionals. There is a need to improve access to services and develop well-defined and flexible care pathways that can accommodate complexities inherent to chronic pain, such as an unpredictable course. Copyright © 2015 John Wiley & Sons, Ltd.

Assessment of chronic post-surgical pain after knee replacement: development of a core outcome set.

BACKGROUND: Approximately 20% of patients experience chronic post-surgical pain (CPSP) after total knee replacement (TKR). There is scope to improve assessment of CPSP after TKR, and this study aimed to develop a core outcome set. METHODS: Eighty patients and 43 clinicians were recruited into a three-round modified Delphi study. In Round 1, participants were presented with 56 pain features identified from a systematic review, structured interviews with patients and focus groups with clinicians. Participants assigned importance ratings, using a 1-9 scale, to individual pain features; those features rated as most important were retained in subsequent rounds. Consensus that a pain feature should be included in the core outcome set was defined as the feature having a rating of 7-9 by ≥70% of both panels (patients and clinicians) and 1-3 by ≤15% of both panels or rated as 7-9 by ≥90% of one panel. RESULTS: Round 1 was completed by 71 patients and 39 clinicians, and Round 3 by 62 patients and 33 clinicians. The final consensus was that 33 pain features were important. These were grouped into an 8-item core outcome set comprising: pain intensity, pain interference with daily living, pain and physical functioning, temporal aspects of pain, pain description, emotional aspects of pain, use of pain medication, and improvement and satisfaction with pain relief. CONCLUSIONS: This core outcome set serves to guide assessment of CPSP after TKR. Consistency in assessment can promote standardized reporting and facilitate comparability between studies that address a common but understudied type of CPSP.