[An Analysis of contributions to the main German chat forum for cancer patients regarding palliative care].
BACKGROUND
Patients are looking for information regarding palliative care in different sources. Goal of this study is the analysis of the most important online forum for cancer patients, Cancer Compass, concerning palliative care.


METHODS
On the chosen date, 3.02.2012, all threads on the various topics (cancer types, cancer treatment, specific user groups, general topics, advice and addresses, countries and regions, Über den Krebs-Kompass & Vermischtes) were systematically analyzed. All entries relating to palliative care were recorded and subsequently analyzed and summarized.


RESULTS
From 231 threads relating to palliative care, 163 were relevant.The general practitioner is the main source of information, but the internet is gaining importance. The forum users often offer good explanations of cancer and palliative care and also refer to web pages with exact definitions. Reliability of web pages is a one issue discussed in the forum.Patients are afraid of pain and dying. Relatives fear for the patient, are overwhelmed and experience existential problems. Both groups use the Cancer Compass to share experiences and get psychological support. Thus Cancer Compass offers a possibility to discuss options for improving quality of life.Especially in the initial phase of care, many users are uncertain what palliative care means. The treatment of pain represents the main concern of patients and their families. Whereas dedicated palliative care wards are rated positively, users speak less positively about pain treatment in general wards in home care.In general, inpatient palliative care was rated positively. However information regarding outpatient care is lacking. Family care is mostly not possible on account of geographical distance. One point of criticism is the discrepancy between urban and rural areas. Patients place more trust in their general practitioner than in hospital doctors.


CONCLUSIONS
Cancer Compass is an important medium for patients and their families to share information, i. a. on palliative care. In order to improve the reliability of information from the internet, a certification of websites would be helpful. In web forums moderators may improve the quality of information.
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Lamb
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Liebl
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Köster
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Hübner
D001293:Attitude to Death; D017028:Caregivers / Q000523:psychology; D058005:General Practitioners; D005858:Germany; D057220:Health Literacy; D017051:Hospice Care / Q000523:psychology; D006801:Humans; D057226:Information Seeking Behavior; D020407:Internet; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010146:Pain / Q000523:psychology; D010166:Palliative Care / Q000523:psychology*; D010353:Patient Education as Topic; D010817:Physician-Patient Relations; D011788:Quality of Life / Q000523:psychology; D012803:Sick Role; D061108:Social Media; D012944:Social Support