Perceived need for information of patients with haematological malignancies: a literature review

Abstract

Aims and objectives. To provide insight into the perceived need for information of patients with haematological malignancies. Background. Providing timely and accurate information to patients diagnosed with a haematological malignancy is a challenge in clinical practice; treatment often has to start promptly, with little time to inform patients. Design. Literature review. Methods. A comprehensive literature search was conducted from all available literature to May 2013 in the databases: Cumulative Index to Nursing and Allied Health Literature, PsycINFO and PubMed (Medline). Relevant studies were reviewed regarding the perceived need for information on various topics, sources of information and satisfaction with information provided. Results. The initial search revealed 215 articles, fourteen of which were relevant. Patients need basic information on the disease (diagnosis and diagnostics), treatment (various treatment options, side effects and duration), prognosis (curability and prolonging life) and all other topics (recovery, self-care and psychosocial functioning). Need for detailed information varied between studies. Patients expressed a higher need for medical than for psychosocial information. Patients preferred to receive information from their doctors the most, followed by nurses. Most studies described patients' satisfaction with the information provided. Conclusion. Based on the limited number of data available, medical information is for patients of higher priority compared to psychosocial information. Patients need basic information on diagnosis, treatment, prognosis and all other topics. Need for detailed information varied between studies. Patients were satisfied with the provided information, preferably offered by doctors and nurses. Relevance to clinical practice. The perceived need for information and satisfaction with the information provided differs strongly between patients. In clinical practice, more attention is needed for information tailored to the patient, taking into account important moderating factors such as age, type of cancer, time since diagnosis, treatment modality and coping style.What does this paper contribute to the wider global clinical community?• Patients diagnosed with haematological malignancies expressed a higher priority for medical than for psychosocial information.• Patients with haematological malignancies have a more passive coping style that may result in a lower need for information seeking and shared treatment decision-making.• Patients preferred to receive information from their doctors the most, followed by nurses, emphasising the importance of this topic in healthcare professionals.

Perspectives of patients with haematological cancer on how clinicians meet their information needs: “Managing” information versus “giving” it

“…The findings are consistent with quantitative evidence that patients with haematological cancers generally feel informed, despite variable knowledge of their condition . They are also consistent with previous qualitative findings that point to the clinical relationship as the key to how such patients can feel informed in a context in which information can be complex and threatening .…”

Patient satisfaction with information on oral anticancer agent use

“…Although problems about sexuality are widespread among cancer patients, information on this subject is often not provided . In the present study, 44% of the patients considered themselves inadequately informed on this issue.…”

“…Subsequently, satisfaction with information might be increased by informing patients in more general terms and explaining that the effect of the treatment in individual patients is highly unpredictable. Inadequate information on side effects has been described as one of the most prominent unmet information needs of cancer patients [9,11,12]. In the present study, inadequate information on side effects included the risk of their occurrence and their management.…”

“…Inadequate information on side effects has been described as one of the most prominent unmet information needs of cancer patients . In the present study, inadequate information on side effects included the risk of their occurrence and their management.…”

Disrupted biographies and balancing identities: A qualitative study of cancer patients’ communication with healthcare professionals about dependent children

“…Research shows that, although patients say that they value emotional support, they prioritise instrumental support from healthcare professionals in the form of being properly informed and involved in treatment decisions over emotional support in telling the family about the cancer (Brown, Parker, Furber, & Thomas, ). In addition, patients diagnosed with haematological malignancies are more concerned with medical than psychosocial information (Friedman, Coan, Smith, Herndon, & Abernethy, ; Friis, Elverdam, & Schmidt, ; Rood, Eeltink, van Zuuren, Verdonck‐de Leeuw, & Huijgens, ). Finally, a Norwegian study of 20 inpatients with various cancer diagnoses in different stages and with different prognoses found that patients did not always want to talk to nurses about their difficult feelings regarding the future.…”