Understanding the Pathway of Cancer Information Seeking: Cancer Information Services as a Supplement to Information from Other Sources.

Cancer information services (CISs) can play an important role within the pathway of cancer information seeking, but so far, this role is not well understood. Callers (n = 6,255) who contacted the largest provider of cancer information in Germany participated in a survey in which they reported their information sources, information level, and needs leading to the call. Persons with prior information from a physician (n = 1,507) were compared to people with prior online information (n = 901) and people with prior information from both sources (n = 2,776). Nearly all callers (96.7%) stated prior sources, while physicians and the Internet were the most frequently reported sources. People, who only talked to a doctor before, are more likely to be a patient and in the disease stages during/after the first treatment or with recurrence than prior Internet users. The two groups do not differ in their prior information level but did differ in their information needs. CISs are an important supplement to other sources, while the information repertoire depends on patients' stages during the cancer journey. Specific characteristics and needs of callers with different prior information sources help to individualize the service of CISs and similar providers.

Preferred and perceived participation roles of oncological patients in medical decision-making: Results of a survey among users of the German Cancer Information Service.

BACKGROUND: Cancer patients are facing a variety of treatment and other disease-related decisions. This study aims to provide insights into preferred and perceived participation roles in decision-making among patients with diverse tumors using the German Cancer Information Service (CIS). METHODS: Patients' decision-making preferences and experiences were assessed as a part of a cross-sectional survey among CIS users. An adapted version of the Control Preferences Scale (CPS) was used to assess preferred and perceived participation roles in eight different areas of medical decision-making (e.g., choice of medication, termination of treatment). Logistic regression analyses were applied to explore preference matching and to analyze associations between participation roles and sociodemographic variables. Moreover, we examined preferences and perceptions of participation roles across different decision situations. RESULTS: In the final sample (N = 1566, 64.9% female, mean age = 61.6), almost half of the patients (47.1%) preferred to take a collaborative role in decisions on treatment methods, whereas 36.3% preferred an active role and 15.9% a passive role. Collaborative role preferences frequently (40.7%) coincided with experiencing a passive role and predicted a reduced chance of a match between preferences and experiences (OR = 0.57, p = .001). A higher level of education was associated with a lower chance of preferring and perceiving a passive role (OR = 0.85, p < .01). Compared with men, women had increased odds of preferring (OR = 1.45, p < .05) and of actually taking (OR = 2.04, p < .001) a passive role in medical encounters. Preferred participation roles regarding treatment methods were highly correlated with preferences in all other decision areas (r > .50, p < .001) except decisions about family involvement. CONCLUSIONS: The study reveals well-known deficits in the fulfilment of patients' collaborative role preferences across different areas of medical decision-making in a sample of CIS users characterized by high information-seeking behavior. Participation roles were not only influenced by the patients' level of education but also by their gender. The gender effect may be more pronounced than previous studies suggest. These effects should be considered in the development of interventions to promote shared decision-making. Additionally, study results indicate that preferences for participation in decisions about treatment methods, as assessed by the CPS, can be generalized to other areas of medical decision-making.

The COVID-19 Pandemic and Cancer Patients in Germany: Impact on Treatment, Follow-Up Care and Psychological Burden.

In response to the ongoing coronavirus disease 2019 (COVID-19) pandemic, governments imposed various measures to decrease the rate of disease spread, and health care policy makers prioritized resource allocation to accommodate COVID-19 patients. We conducted a cross-sectional online survey in Germany (July 2020-June 2021) to assess the frequency of changes to cancer care among cancer patients and to explore the psychological impact of the pandemic writ large. Cancer patients who contacted the Cancer Information Service (Krebsinformationsdienst, KID) of the German Cancer Research Center (Deutsches Krebsforschungszentrum, DKFZ) via email were invited to complete an online questionnaire, capturing demographics, cancer specifics (e.g., type, disease phase, primary place of treatment, etc.), and any changes to their medical, follow-up, psycho-oncological or nursing care. General level of psychological distress was measured using the Hospital Anxiety and Depression Scale (HADS) along with face-validated items regarding worries and social isolation specific to the pandemic. In total, 13% of 621 patients reported a change to their treatment or care plan. Of those patients with changes, the majority of changes were made to follow-up care after treatment (56%), to monitoring during treatment (29%) and to psychological counseling (20%). Of the overall sample, more than half of patients (55%) reported symptoms of anxiety and 39% reported symptoms of depression. Patients with a change in cancer care were more likely to report symptoms of depression than those with no change (AOR: 2.18; 95% CI: 1.26-3.76). Concern about the pandemic affecting the quality of health care was a predictor of both anxiety (AOR: 2.76; 95% CI: 1.75-4.35) and depression (AOR: 2.15; 95% CI: 1.43-3.23). Results showed that the majority of cancer patients in our study did not experience a change in their cancer care. However, the level of anxiety and psycho-social burden of cancer patients during the pandemic was high throughout the study period. Our findings underscore the need for health care services and policy makers to assess and to attend cancer patients' medical needs, with added emphasis on patients' psychological and social well-being. This applies particularly in situations where the healthcare system is strained and prioritization is necessary.

[Trends in cancer information services over 25 years : An analysis of inquiries from patients and relatives made to the Cancer Information Service of the German Cancer Research Center from 1992 to 2016]. / Langzeittrends beim Krebsinformationsdienst (KID) des Deutschen Krebsforschungszentrums (DKFZ) : Eine Analyse der Anfragen von Patientinnen und Patienten sowie Angehörigen von 1992 bis 2016.

BACKGROUND: Cancer information services (CISs) are a valuable source of evidence-based information. Previous studies in the field of CISs often investigate only short periods of time. However, there is a need for long-term analyses to identify changes in the use of CISs. OBJECTIVES: The purpose of this study was to analyze trends in the inquiries of patients and surrogate seekers to a CIS. METHOD: We conducted a secondary data analysis of the inquiry records of the German CIS (Krebsinformationsdienst, KID) hosted by the German Cancer Research Center from 1992 until 2016 (N = 545,070). Trends in the number of inquiries were described using the whole sample, while the description of further characteristics is based on a sample (n = 55,046) of patients, their family members, and friends. RESULTS: The inquiries increased in the period examined (1992: 11,344 inquiries; 2016: 34,869 inquiries). Since 2005, a greater share of patients (between 52 and 60%) than surrogate seekers have been contacting the CIS. The mean age of both self-seeking and supported patients increased from under 55 years between 1992 and 2000 up to over 60 years in the year 2016. Breast cancer is at all times the most frequently inquired cancer type (patients: n = 11,319, 39%; surrogate seekers: n = 4173, 17%). Even after the implementation of e­mail as an additional communication channel, the majority of inquirers still prefer contact by phone (between 80 and 98%). CONCLUSIONS: Changes in the utilization of a CIS over time are discussed against the background of structural changes, such as shifts in prevalence rates, family structures, or media environments.

Demographic and cancer-related differences between self-seeking patients and supported patients: Analysis of cancer information-service data.

OBJECTIVE: Surrogate information seeking is quite common, and several studies have presented data on caregivers, family members, and friends who seek health information on the Internet or from a cancer-information service (CIS) on behalf of cancer patients. However, these studies provide little information about the patients who are supported by surrogate seekers. Therefore, this study analyzed demographic and cancer-related differences, including diverse informational needs, between self-seeking patients and patients who benefited from surrogate seekers (ie, caregivers, family, or friends) requesting information on their behalf. METHODS: We conducted a retrospective audit of phone and e-mail inquiries to a German CIS between January and December 2016 from self-seeking patients (n = 13 723) and surrogate information seekers, as well as the corresponding supported patients (n = 6696). RESULTS: Supported patients were more likely to be males (P < 0.001), older than self-seeking patients (P < 0.001), and older than the corresponding surrogate seekers (P < 0.001). They were also more likely to be in the diagnostic or palliative stage (P < 0.001) and were less likely to suffer from breast cancer or prostate cancer (P < 0.001) than self-seeking patients. There were significant differences in the CIS requests of self-seekers and surrogate seekers. CONCLUSIONS: The results point to different support needs of self-seekers and surrogate seekers. Thus, surrogate seekers and their corresponding supported patients should be seen as a separate target group to self-seeking patients, with the former requiring informational and emotional support on diverging topics and at different disease stages.