Chapter 2. Literature Review
2.3 Cancer patients’ informational needs
Information acquisition is significant for cancer patients and their families since,
in a very short period of time, patients and caregivers need to digest large amount of
specialized information, make crucial decisions with serious consequences, and
prepare for the post-treatment recovery period. From the onset of the disease,
interaction with new information is ceaseless throughout the illness trajectory. The
following discussion will examine informational needs in detail.
The first step of literature analysis on this topic was by identifying systematic or
literature reviews. The abovementioned research by Rutten et al. (2005) is the seminal
work in regard to information needs, with the number of citations exceeding 648 and
with 91 reviewed articles related to cancer information needs from 1980 till 2003. The
uniqueness of this review for a comprehensive understanding of information needs
lies in the time span of the study, analysis of quantitative as well as qualitative
research papers, inclusion of different cancer types, and a clear division into
categories and subcategories.
Six main categories of needs were discovered with four main types identified:
treatment-related information (38.1%), cancer-specific information (12.8%), and
rehabilitation information (12.2%), followed by prognosis-related information need
(10.8%). Rehabilitation included nutrition during the recovery period which is the
second biggest subcategory with 21.6%, only surpassed by self care and home care
rehabilitation information need (30.9%). Informational need in interpersonal and
social aspect accounted only to 6%. Notably, 35% of patients possess a need of
treatment-related information in the post-treatment phase as well. In this phase this
type of information demonstrates the highest percentage among all the need
categories exceeding recovery information need (22.5%). This finding is important
and emphasizes the significance of investigating evolution of information needs at
different stages of the cancer continuum for solving patients’ informational problems.
Ziegler et al. (2004) completed a comprehensive literature review of information
needs, experiences, and decision-making in regard to head and neck cancer patients.
The article states that unlike other cancers, head and neck cancer patients often suffer
from psychosocial problems as a consequence of facial disfigurement or impairment
of vital functions like speaking or talking. The complexity of this cancer type makes it
especially worth to be researched. Papers that examined information needs of neck
and head cancer patients stress that information giving is often incomplete or does not
meet the needs of patients. Moreover, communication skills and personal qualities of
healthcare professionals are important. Patients wished to have information presented
in a simpler language and be given an overall understanding of the treatment, as
opposed to a detailed one. The linkage between information needs and anxiety or
psychological problems was identified in two reviewed studies. The authors argue that
research of head and neck cancer patients’ needs is insufficient and suggest that
qualitative investigations via interviews could be insightful.
Husson et al. (2011) completed another systematic review of 25 articles that
included investigation of information provision for cancer patients and its association
with quality of life, anxiety, and depression. 5 articles examining anxiety and
depression of cancer patients in general support that a positive relationship exists
between provision of information and level of anxiety or depression, but negative
correlation was also reported in two studies. It was noted that the time factor is an
important variable in influencing levels of anxiety or depression. Another important
conclusion of the study is that anxiety can impede information processing due to
diminished mental health of a patient. Husson et al. (2011) also emphasizes that “the
information needs of cancer patients vary by gender, age, cultural background,
educational level, cancer type, stage of disease and coping style” (Husson et al. (2011,
p.761), and therefore urges for provision of customized information to patients.
According to systematic analysis of 57 articles by Harrison et al. (2009), it is
tentatively concluded that patients’ needs are the most prevalent during the treatment
and post-treatment phases. In their analysis of the types of unmet needs, the need for
information placed third after needs related to daily living and psychological state.
The researchers affirm that needs constantly change throughout the cancer care
continuum, but prospective studies of cohorts of patients which might explain how
changes of need evolve are insufficient.
Ankem (2006) conducted a meta-analysis of demographic and situational factors
influencing information needs of cancer patients between 19 to 75 years old and
presented two interesting findings. First is that younger patients (55 years old or
below) expressed a higher need for information. The second finding corresponds with
the finding previously stated by Ankem (2005) – patients with an active role in
decision-making show greater need for cancer-related information. It is concluded
that age and chosen role in decision-making are the variables that predict the need for
information most precisely, not gender, level of education, time since the diagnosis,
or stage of the disease. More research on demographic and situational factors is
needed to give a more detailed explanation of all the intricate relationships between
various variables. In this article, Ankem et al. also list the two most important
information needs emphasized by patients – information about the disease and
information regarding the treatment. This article clearly underlines the importance of
more advanced research on reasons behind the need for information, especially in the
case of older patients who are passive in regard to receiving information.
Research on understanding Iranian cancer patients’ informational needs was
done by Heidari & Mardani-Hamooleh in 2015 using a qualitative research method.
The authors organized 25 semi-structured interviews with each spanning 40-55
minutes with patients from 32 to 51 years old, 14 females and 11 males diagnosed
with 5 different types of cancers. Importantly, the position of the participants in
cancer journey differed from 2 months to 4 years. The interview data was transcribed
and conventional content analysis was employed. Two main categories were revealed
– (1) the need for information related to the disease including two subcategories as
disease and prognosis and (2) the need for information about daily life, including
information about regular life activities and healthy lifestyle. Healthy lifestyle
included topics such as nutrition, exercise, and prevention. The authors highlight the
importance of the findings through this deep-level analysis, but admit limitations such
as heterogeneous cancer types and multiple stages as well as sample size of only 25
patients.
A few papers pay attention to the specificity of head and neck cancer. For
instance, Koster & Bergsma (1990) posit that due to facial impairment, head and neck
cancer is highly traumatic to patients and it has a significant influence on
interpersonal aspect of patients’ lives, emotional health is impacted as well. What is
also special about the majority of HNSCC patients is their low socioeconomic status
and relatively low educational level. This implies that these patients require
considerable help from medical professionals. One of the methods to support these
patients is information provision in a customized, clear, and understandable way.
Semple et al. (2012) provided a significant argument about the importance of
information provision for HNSCC patients: “many of the side-effects of head and
neck cancer treatments are predictable.” (Semple et al. 2012, p.589). The authors
reviewed the previous body of research about information needs of cancer patients
with particular focus to head and neck cancer and suggested that provision of
appropriate written information is highly important in addressing patients’ needs and
serves as a complimentary tool for oral consultations. Specifically, importance of
finely designed leaflets is highlighted.
Information provision is closely related to patients’ expectations regarding
cancer treatment and recovery. Llewellyn et al. (2005) completed 15 semi-structured
interviews and revealed that head and neck cancer patients have different preferences
about information and different opinions on timing of information provision. They
argue that timing and amount of information should be individually assessed to better
prepare patients for upcoming treatment challenges. This argument corroborates with
suggestions proposed by Newell et al. (2004) in his study regarding information
provision prior to surgery – information for patients should be individually designed.
Additionally, Newell et al. (2004) reveals another issue related to information
provision – inadequate provision of the information after surgical treatment,
especially after a 3 to 6 month period.
Research conducted by Maddock et al. (2011) was already partially discussed in
the information seeking behavior section. The results in relation to information needs
are graphically presented below (Figure 2.1). 7 main information needs out of 14 are
listed in descending order: side effects (about 62%), treatment options, local
information (support groups, health facilities), causes and spread of cancer, my
diagnosis, diet and nutrition (about 39%), and physical activity and promoting
recovery.
Figure 2.1 Information needs (Maddock et al. 2011)