Unmet information needs and limited health literacy in newly diagnosed breast cancer patients over the course of cancer treatment

Halbach, Sarah; Ernstmann, Nicole; Kowalski, Christoph; Pfaff, Holger; Pförtner, Timo-Kolja; Wesselmann, Simone; Enders, Anna

doi:10.1016/j.pec.2016.06.028

Cited by 121 publications

(109 citation statements)

References 44 publications

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“…29,30 Although there are studies indicating that selective attrition does not always affect the estimates of associations between variables, 31 Health System and Information needs in these patients, whether it is related with health literacy issues, patient-physician communication, or insufficient information provision. [33][34][35] We additionally suggest piloting different intervention strategies, ie, written or web-based information, smartphone applications, specialized nurse consultations, to meet the information needs of Mexican breast cancer patients.…”

Section: Study Limitationsmentioning

confidence: 99%

Course and predictors of supportive care needs among Mexican breast cancer patients: A longitudinal study

et al. 2018

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ObjectiveThis study examined the course and predictors of supportive care needs among Mexican breast cancer patients for different cancer treatment trajectories.MethodsData from 172 (66.4% response rate) patients were considered in this observational longitudinal study. Participants were measured after diagnosis, neoadjuvant treatment, surgery, adjuvant treatment, and the first post‐treatment follow‐up visit. Psychological, Health System and Information, Physical and Daily Living, Patient Care and Support, Sexual, and Additional care needs were measured with the Supportive Care Needs Survey (SCNS‐SF34). Linear mixed models with maximum‐likelihood estimation were computed.ResultsThe course of supportive care needs was similar across the different cancer treatment trajectories. Supportive care needs declined significantly from diagnosis to the first post‐treatment follow‐up visit. Health System and Information care needs were the highest needs over time. Depressive symptoms and time since diagnosis were the most consistent predictors of changes in course of supportive care needs of these patients.ConclusionsHealth system and information care needs of Mexican breast cancer patients need to be addressed with priority because these needs are the least met. Furthermore, patients with high depressive symptoms at the start of the disease trajectory have greater needs for supportive care throughout the disease trajectory.

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Section: Study Limitationsmentioning

confidence: 99%

Course and predictors of supportive care needs among Mexican breast cancer patients: A longitudinal study

et al. 2018

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“…Adequately informed cancer patients have been reported to experience lower levels of anxiety and depression and report a better quality of life . Information provision can improve treatment compliance, create more realistic expectations, promote participation and self‐care, and generate feelings of safety and security . The benefits of information provision in the diagnostic and treatment phases of cancer care may reduce the need for supportive care in survivorship …”

Section: Introductionmentioning

confidence: 99%

“…8 Information provision can improve treatment compliance, create more realistic expectations, promote participation and self-care, and generate feelings of safety and security. 9,10 The benefits of information provision in the diagnostic and treatment phases of cancer care may reduce the need for supportive care in survivorship. 8,11 The response to information needs is also playing an increasingly important role in patients' satisfaction with care.…”

Section: Introductionmentioning

confidence: 99%

What information do patients want across their cancer journeys? A network analysis of cancer patients’ information needs

et al. 2018

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BackgroundPatients want information across their cancer journeys. We investigated what sort of information they want and at what stage in the cancer journey by examining English patients’ satisfaction derived from ratings of their care.MethodsUsing patient experience data from 209 Clinical Commission Groups (CCGs) involving 72 788 respondents in 2016, overall patient satisfaction ratings and information needs questions were extracted. Novel network analysis techniques were used to construct an undirected weighted concentration network to assess the relationship between information needs and patient satisfaction.ResultsFrom the network analysis, we found that patients value information early in the pathway; there were higher associations between patient satisfaction and when information needs are met in earlier phases of the cancer journey. Across the stages of the cancer journey, strong associations between information needs and patient satisfaction emerged during diagnostic testing and also at those points when patients received information provided by the clinical nurse specialists. A mixture of strong and weak associations between patient satisfaction and information needs was found during later phases of the cancer journey, specifically when patients move from treatment to home care. Our study identified that meeting needs for information related to supportive care may be a weaker factor in patient satisfaction than meeting needs for information related to the patient's disease, its treatment and the side effects of treatment.ConclusionIf patients have their information needs met, especially during stages within the cancer journey when information needs are highest, they are more likely to be satisfied with their care. Our study has implications for information giving and improving patient satisfaction in cancer care.

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“…32,33 Women, younger people, people with higher educational level, the unemployed and chronically ill are described to have less fulfilled knowledge expectations 33,40,41 or received knowledge 30 than their counterparts. The same is true for patients with low health literacy 37 and patients in a depressive state. 41 Patients have also reported receiving insufficient information 19,[42][43][44] which may leave them feeling vulnerable.…”

Section: Acquisition Of Motivation (Self--awareness and Attitude Thromentioning

confidence: 76%

“…Studies show that surgical patients, independent of their type of surgery, generally have high knowledge expectations and that these expectations are not sufficiently fulfilled 32,33,37,38 although some topics are better covered in patient education than others. Technological and bio--physiological aspects of care seem to be most expected by patients and best addressed by healthcare professionals.…”

Section: Acquisition Of Motivation (Self--awareness and Attitude Thromentioning

confidence: 99%

Learning as a patient : What and how individuals want to learn when preparing for surgery, and the potential use of serious games in their education

Ingadóttir¹

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Unmet information needs and limited health literacy in newly diagnosed breast cancer patients over the course of cancer treatment

Cited by 121 publications

References 44 publications

Course and predictors of supportive care needs among Mexican breast cancer patients: A longitudinal study

Course and predictors of supportive care needs among Mexican breast cancer patients: A longitudinal study

What information do patients want across their cancer journeys? A network analysis of cancer patients’ information needs

Learning as a patient : What and how individuals want to learn when preparing for surgery, and the potential use of serious games in their education

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