JMIR Publications

ABSTRACT

Background:

Breast cancer has become one of the most frequently diagnosed carcinomas and the leading causes of cancer deaths. The prominent growth in the number of breast cancer patients has brought great pressure on health service. Meanwhile, the information needed by patients has increased and become more complicated. Therefore, a comprehensive and in-depth understanding of their information needs is significant in improving the quality of health care. However, previous studies related to the information needs of breast cancer patients focused on different perspectives and have contributed to individual results. A systematic review and synthesis of breast cancer patients’ information needs are thus necessary.

Objective:

This paper aims to identify, evaluate, and synthesize existing primary qualitative research on the information needs of breast cancer patients systematically.

Methods:

Web of Science, EBSCO, Scopus, ProQuest, PubMed, PsycINFO, The Cochrane Library, The Cumulative Index to Nursing and Allied Health Literature were searched on February 12 and July 9, 2019 to collect relevant studies. Google scholar searching, interpersonal network recommending, and reference chaining were additionally conducted. Eligible studies were those focusing on the information needs (the information they needed across cancer continuum) of breast cancer patients or their social networks, using qualitative or mixed-methods. Subsequently, Critical Appraisal Skill Programme (CASP) checklist was used to assess the quality of included research, and then the results, findings, and discussions were extracted. Data analysis was guided by the theory-generating meta-synthesis and grounded theory approach.

Results:

Three themes, eighteen categories, and sixty-three concepts emerged: (1) incentives (physical abnormality, inquiry of others, subjective norm, and problems during appointments); (2) information needs (prevention, diagnosis, etiology, clinical manifestation, treatment, prognosis, impact on normal life and coping, research progress, social assistance); (3) moderating variables (health literacy, demographic characteristics, disease status, attitude and sociocultural environment). It was also found that breast cancer patients sought a variety of information among different stages of the cancer journey, which were triggered by different incentives. Besides, five types of variables were found to moderate the formation of information needs.

Conclusions:

This study contributes to a thorough model of information needs among breast cancer patients and provides practical suggestions for health and information professionals.