How do the information needs of cancer patients differ at different stages of the cancer journey? A cross-sectional survey

Abstract

ObjectivesProviding information to cancer patients can have significant benefits to their psychological wellbeing. The aim of this study was to investigate whether and how information needs may differ for patients at different stages of the cancer journey.DesignCross-sectional, self-completed survey using convenience sampling.SettingOncology outpatients in Wolverhampton, West Midlands.ParticipantsCancer patients aged 18 years and over.Main outcome measuresThe survey used Likert scales to determine whether patients wished to know more about 35 items of information categorized under seven domains: cancer (diagnosis); prognosis; treatment; rehabilitation; psychological/spiritual; social/family; and body image/sexuality. Each domain was scored, with higher scores indicating a greater wish for information.ResultsThere were 187 participants (50% response rate). Patients tended to want more information, particularly related to prognosis. Post-treatment patients continued to have information needs comparable to patients undergoing treatment or at the pre-treatment stage, except with reference to treatment-related information (p = <0.01), although as time from diagnosis increased, information needs reduced. Educational attainment, age, treatment status, gender and ethnicity were all significant predictors of scores in various domains.ConclusionThis study indicates that the time since diagnosis may interact with various demographic and disease-related factors in contributing to the information needs of cancer patients. The majority of cancer patients wish to know more about a wide range of factors, and such information seeking preferences are present regardless of an individual's stage following diagnosis.

Informing Severely Ill Patients: Needs, Shortcomings and Strategies for Improvement

“…context dependent and vary throughout the cancer care continuum and between individuals [4,[18][19][20][21][22]. What patients want to know does not necessarily correspond to what health care professionals think they want to know [23][24][25].…”

“…Providing personalized information for patients through the cancer care continuum facilitates the coping process, improves patient comfort and enhances patient choice. However, information needs often remain unmet [1][2][3][4], resulting in unrelieved symptoms and distress and unnecessary hospitalizations [5,6]. In particular, patients report substantial information deficits on therapeutic options, goals of treatment, impact of cancer on daily life, and management of symptoms of the disease [3,6,7].…”

Factors Associated with Psychological Characteristics in Patients with Hepatic Malignancy before Interventional Procedures

“…Education, as a protective factor, was significantly associated with obsessive-compulsive tendencies and phobia symptoms. It may be the case that patients with a higher educational attainment are more likely to employ active information seeking strategies, and thus are able to satisfy their psychosocial needs (Mistry et al, 2010) and decrease their psychological distress. IVP times, another protective factor, was only associated with paranoia symptoms (OR=0.127).…”

“…In the former studies, some evidence indicates that the benefits of information provision for cancer patients include a positive impact on feelings and attitudes, improved coping ability, and a reduction in anxiety and mood disorder (Sainio et al, 2003;Mistry et al, 2010). Nevertheless, Tavoli et al (2007) performed a cross sectional study of anxiety and depression in 142 patients with gastrointestinal cancer, and found that psychiatric disorders occurred to lesser extent in patients who did not know their cancer diagnosis.…”

Survivorship Care Plans for People with Colorectal Cancer: Do They Reflect the Research Evidence?

“…The occurrence of crc and its treatment can significantly alter an individual's nutrition needs and eating habits, because the manner in which the body digests and absorbs food is affected [14][15][16] . As a result, individuals who receive a crc diagnosis face myriad challenges while moving from one phase of the cancer trajectory to another 17 and will require specific information to better cope with the challenges. Although scps are apparently beneficial, there are pragmatic challenges in implementing them not only in crc, but also across all disease groups.…”