Complexity of care and strategies of self-management in patients with colorectal cancer.

PURPOSE: Given the inherent complexity of cancer care, in which personal, social, and clinical aspects accumulate and interact over time, self-management support need to become more comprehensive. This study has the following two aims: 1) to analyze and describe the complexity of individual patient situations and 2) to analyze and describe already established self-management strategies of patients to handle this complexity. METHODS: A qualitative study was conducted. Ten focus groups were performed collecting perspectives of the following three user groups: patients with colorectal cancer (n=12) and representatives from support groups (n=2), physicians (n=17), and other health care professionals (HCPs; n=16). Data were analyzed using qualitative content analysis. RESULTS: The results showed that cancer patients are struggling with the complexity of their individual situations characterized by the 1) "complexity of disease", 2) "complexity of care", and 3) "complexity of treatment-related data". To deal with these multifaceted situations, patients have established several individual strategies. These strategies are "proactive demanding" (eg, to get support and guidance or a meaningful dialog with the doctor), "proactive behavior" (eg, preparation of visits), and "proactive data management" (eg, in terms of merging treatment-related data and to disseminate these to their health care providers). CONCLUSION: Patients with colorectal cancer have to handle a high complexity of individual situations within treatment and care of their disease. Private and social challenges have a culminating effect. This complexity increases as patients experience a longer duration of treatment and follow-up as patients have to handle a significantly higher amount of data over time. Self-management support should focus more on the individual complexity in a patient's life. This includes assisting patients with strategies that have already been established by themselves (like preparation of visits).

Collaboration and communication in colorectal cancer care: a qualitative study of the challenges experienced by patients and health care professionals.

BACKGROUND: Colorectal cancer is becoming a chronic condition. This has significant implications for the delivery of health care and implies the involvement of a range of health care professionals (HCPs) from different settings to ensure the needed quality and continuity of care. OBJECTIVES: To explore the challenges that patients and HCPs experience in the course of colorectal cancer care and the perceived consequences caused by these challenges. METHODS: Ten semi-structured focus groups were conducted including patients receiving treatment for colorectal cancer, representatives of patient support groups, physicians and other non-physician HCPs from different health care settings. Participants were asked to share their experiences regarding colorectal cancer care. All data were audio- and videotaped, transcribed verbatim and thematically analysed using qualitative content analysis. RESULTS: Patients and HCPs (total N = 47) experienced collaboration and communication as well as exchange of information between HCPs as challenging. Particularly communication and information exchange with GPs appeared to be lacking. The difficulties identified restricted a well-working coordination of care and seemed to cause inappropriate health care. CONCLUSION: Colorectal cancer care seems to require an effective, well-working collaboration and communication between the different HCPs involved ensuring the best possible care to suit patients' individual needs. However, the perceived challenges and consequences of our participants seem to restrict the delivery of the needed quality of care. Therefore, it seems crucial (i) to include all HCPs involved, especially the GP, (ii) to support an efficient and standardized exchange of health-related information and (iii) to focus on the patients' entire pathway of care.

Personal electronic health records: understanding user requirements and needs in chronic cancer care.

BACKGROUND: The integration of new information and communication technologies (ICTs) is becoming increasingly important in reorganizing health care. Adapting ICTs as supportive tools to users' needs and daily practices is vital for adoption and use. OBJECTIVE: In order to develop a Web-based personal electronic health record (PEPA), we explored user requirements and needs with regard to desired information and functions. METHODS: A qualitative study across health care sectors and health professions was conducted in a regional health care setting in Germany. Overall, 10 semistructured focus groups were performed, collecting views of 3 prospective user groups: patients with colorectal cancer (n=12) and representatives from patient support groups (n=2), physicians (n=17), and non-medical HCPs (n=16). Data were audio- and videotaped, transcribed verbatim, and thematically analyzed using qualitative content analysis. RESULTS: For both patients and HCPs, it was central to have a tool representing the chronology of illness and its care processes, for example, patients wanted to track their long-term laboratory findings (eg, tumor markers). Designing health information in a patient accessible way was highlighted as important. Users wanted to have general and tumor-specific health information available in a PEPA. Functions such as filtering information and adding information by patients (eg, on their well-being or electronic communication with HCPs via email) were discussed. CONCLUSIONS: In order to develop a patient/user centered tool that is tailored to user needs, it is essential to address their perspectives. A challenge for implementation will be how to design PEPA's health data in a patient accessible way. Adequate patient support and technical advice for users have to be addressed.

The patients' active role in managing a personal electronic health record: a qualitative analysis.

PURPOSE: The complexity of illness and cross-sectoral health care pose challenges for patients with colorectal cancer and their families. Within a patient-centered care paradigm, it is vital to give patients the opportunity to play an active role. Prospective users' attitudes regarding the patients' role in the context of a patient-controlled electronic health record (PEPA) were explored. METHODS: A qualitative study across regional health care settings and health professions was conducted. Overall, 10 focus groups were performed collecting views of 3 user groups: patients with colorectal cancer (n = 12) and representatives from patient support groups (n = 2), physicians (n = 17), and other health care professionals (HCPs) (n = 16). Data were audio- and videotaped, transcribed verbatim and thematically analyzed using qualitative content analysis. RESULTS: The patients' responsibility as a gatekeeper and access manager was at the center of the focus group discussions, although HCPs addressed aspects that would limit patients taking an active role (e.g., illness related issues). Despite expressed concerns, PEPAs possibility to enhance personal responsibility was seen in all user groups. CONCLUSIONS: Giving patients an active role in managing a personal electronic health record is an innovative patient-centered approach, although existing restraints have to be recognized. To enhance user adoption and advance PEPAs potential, key user needs have to be addressed.