Exploring the patient experience of locally advanced or metastatic pancreatic cancer to inform patient-reported outcomes assessment.

PURPOSE: Pancreatic cancer and its treatments impact patients' symptoms, functioning, and quality of life. Content-valid patient-reported outcome (PRO) instruments are required to assess outcomes in clinical trials. This study aimed to: (a) conceptualise the patient experience of pancreatic cancer; (b) identify relevant PRO instruments; (c) review the content validity of mapped instruments to guide PRO measurement in clinical trials. METHODS: Qualitative literature and interviews with clinicians and patients were analysed thematically to develop a conceptual model of patient experience. PRO instruments were reviewed against the conceptual model to identify gaps in measurement. Cognitive debriefing explored PRO conceptual relevance and patients' understanding. RESULTS: Patients in the USA (N = 24, aged 35-84) and six clinicians (from US and Europe) were interviewed. Pre-diagnosis, pain was the most frequently reported symptom (N = 21). Treatments included surgery, radiation, chemotherapy, and immunotherapy. Surgery was associated with acute pain and gastrointestinal symptoms. Chemotherapy/chemoradiation side effects were cyclical and included fatigue/tiredness (N = 21), appetite loss (N = 15), bowel problems (N = 15), and nausea/vomiting (N = 15). Patients' functioning and well-being were impaired. The literature review identified 49 PRO measures; the EORTC QLQ-C30/PAN26 were used most frequently and mapped with interview concepts. Patients found the EORTC QLQ-C30/PAN26 to be understandable and relevant; neuropathic side effects were suggested additions. CONCLUSIONS: This is the first study to develop a conceptual model of patients' experience of metastatic/recurrent pancreatic cancer and explore the content validity of the EORTC QLQ-C30/PAN26 following therapeutic advances. The EORTC QLQ-C30/PAN26 appears conceptually relevant; additional items to assess neuropathic side effects are recommended. A recall period should be stated throughout to standardise responses.

Spiritual issues of family members in a pancreatic cancer chat room.

PURPOSE/OBJECTIVES: To describe spiritual issues addressed by users of a pancreatic cancer informational Web site. DESIGN: Qualitative, descriptive. SETTING: The patient and family chat room of Johns Hopkins Hospital's pancreatic cancer Web site. SAMPLE: 600 postings on the pancreatic cancer Web site. METHODS: Identification of categories and themes in Web postings using the constant comparison method of content analysis. MAIN RESEARCH VARIABLES: Spirituality, relationship of the person posting a message (poster) to the person with cancer. FINDINGS: Relationship of the poster to the person with pancreatic cancer was explicit in 68% (n = 410) of the 600 postings, and 83% of those 410 postings indicated that the poster was a family member. Issues of spirituality appeared in 19% (n = 114) of the 600 postings and addressed four themes: spiritual convergence, reframing suffering, hope, and acceptance of the power of God and eternal life. Six percent of postings were by family members reporting on the death of their loved ones, suggesting that the site also served a bereavement function. CONCLUSIONS: Family members of patients with pancreatic cancer sought and received spiritual comfort in a variety of forms in an Internet-based cancer chat room. IMPLICATIONS FOR NURSING: Nurse developers of cancer information Web sites should periodically assess how the sites are being used and apply the information to the refinement of the sites to better meet user needs. Further study is needed to develop and evaluate cancer Web sites as an evolving medium for providing spiritual support to family members of patients with life-threatening forms of cancer.

The effect of a Frequently Asked Questions module on a pancreatic cancer Web site patient/family chat room.

The Internet provides access to health information and a supportive community with similar illness concerns. Securing accurate information about treatment and prognosis is important to those with pancreatic cancer given its high mortality and short survival. The purpose of this descriptive-comparative study was to determine the effect of a Frequently Asked Questions (FAQ) module on postings in the chat room of a pancreatic cancer Web site. Six hundred postings were analyzed. Three themes were isolated: information seeking, giving, or both; support seeking, giving, or both; and reporting status or death. Information included treatments, nutrition, prognosis, end-of-life care, cost of care, symptoms, and support (social, emotional, spiritual, or physical). A greater proportion of postings sought information after the FAQ module was added, although questions about medical treatment decreased, whereas questions about prognosis and end-of-life care nearly doubled. There was no difference in the proportion of postings addressing support. Medical treatment was the most common treatment reported and pain was the most common symptom reported. This study supported the addition of a FAQ module to a pancreatic cancer Web site and revealed the need for information regarding pain management and care giving at the end of life.