Measuring information needs among cancer patients

doi:10.1016/S0738-3991(00)00166-X

Patient Education and Counseling

Volume 43, Issue 3, June 2001, Pages 255-264

https://doi.org/10.1016/S0738-3991(00)00166-X Get rights and content

Abstract

A scale for assessing information needs of cancer patients was constructed and validated. Two studies were conducted. Study 1 was designed to test the factor structure of the measurement instrument. A total of 498 patients with breast cancer and Hodgkin disease were interviewed. In study 2, 133 patients with head and neck cancer were measured just before treatment as well as 6, 13 and 52 weeks after treatment. Study 2 aimed to confirm the factor structure established in study 1, and to test for construct validity in a new population, the psychometric properties of the information needs scales, and the scales’ sensitivity to change. In study 1 a two-factor structure (an action and a disease-oriented scale) including 17 items was revealed. The second study confirmed the factor structure from study 1. As hypothesized, greater information needs related to higher levels of state-anxiety, more depression, and more psychological complaints. Although, correlations over time per information need scale indicate some stability of scores, findings suggested that the need for information about disease and treatment is less stable over time than need for information about access to help and solutions. Further validation of the instrument is required.

Introduction

Many cancer patients have questions they want answers to [1], [2], [3], [4], [5]. Research found that the vast majority of cancer patients wanted to be given all available information about their condition, whether good or bad [6], [7]. Literature on information needs among cancer patients suggests that needs for information remain unmet for a major part of the patients [8], indicating the existence of misconceptions among health care providers regarding patients’ needs for information. Unmet information needs are believed to increase emotional distress for patients (e.g. increased anxiety and depression) [9], [10] and subsequently to hamper patients’ adjustment to their illness [11]. The need for information is expected to be high in the period immediately before the medical treatment (discovery and diagnostic phase) [12], [13], during treatment (at the hospital, during outpatient treatment) [14], [15], [16], and in the period after the treatment (returning home, recovery, residual, terminal phase) [17].

Developing an instrument that measures a patients’ need for information is one step towards the improvement of clinical practice and research with cancer patients. The purpose of this paper is to describe the reliability testing and validation of an instrument which measures the need for information among patients with cancer. Two separate studies were used in this development process. The first cross-sectional study was conducted with patients with Hodgkin’s disease and patients with breast cancer, and the second prospective study was conducted with patients with cancer in the head and neck area. The two studies are discussed separately, followed by a general discussion on the application of the findings.

Section snippets

Information need measures

Information needs is defined in this study as an experience of shortness in information concerning a life domain which is of relevance to the patient. To construct a scale that would measure information need as experienced by cancer patients, the initial step consisted of an exploratory study in 1980 to identify events perceived as indicative for information need.

Seventeen categories were derived from two group discussions with patients with breast cancer and patients with Hodgkin’s disease,

Study 1: initial cross-sectional analysis

Study 1 was part of a larger study designed to gain insight into patient and illness characteristics which are related to the (need for) social affiliation with fellow-patients [18]. One of the factors studied among fellow-patients was information need. Data from patients with Hodgkin’s disease and breast cancer patients were used for the initial development of the scale to measure this factor.

Uni-dimensionality, internal consistency and other scale findings

The data of the entire sample, 498 cases, were subjected to principal component analysis, conducted through SPSS-X (version 4.10) on the 17 items. This analysis was used to estimate the number of factors prior to principal factors extraction with oblique rotation. The initial analysis provided a list with two factors with eigenvalues greater than 1, indicating a two-factor solution, and which was confirmed by factor analysis (Table 2). Those items were retained which had a factor loading

Study 2: replication with longitudinal data

The PINQ scales were used in a second, large scale prospective study of head and neck cancer patients. The aim of this longitudinal study was to describe the rehabilitation process and outcomes among patients treated for cancer in the head and neck area. Study 2 aimed to (1) replicate the factor structure established in study 1, (2) test the scales’ sensitivity to change, (3) test the psychometric properties of the PINQ scales, and (4) test for construct validity in a new population. Regarding

Uni-dimensionality, internal consistency and other scale findings

Principal components analysis conducted on the 17 items revealed from study 1, was used to estimate the number of factors prior to principal factors extraction with oblique rotation. As in study 1, two eigenvalues were greater than 1. Table 1 presents the factor loadings (higher than 0.40), the eigenvalues, the percentage variance explained, the correlation between factors and Cronbach’s alphas. The pattern of loadings was remarkably similar to the cross-sectional data. All items loaded

General conclusion and practice implications

The factor structure of the PINQ scales in our longitudinal study of patients with head and neck cancer was found to be comparable to the structure found in the cross-sectional study on patients with breast cancer and Hodgkin disease. This structure indicating a measurement instrument with two distinct and robust factors: a “disease-oriented” scale indicating a need for information about the disease and treatment, and an “action-oriented” scale indicating a need for information on access to

Acknowledgements

The authors would like to thank the Netherlands Cancer Foundation for the financial support for both studies.

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This however may be attributable to the type of information being sought from patients. Although research has found that over time information needs tend to be stable, stability is less likely for the need of information about disease and treatment as opposed to the need for information about access to help and solutions [47]. There was considerable variability of treatment regimens within the sample.
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Measuring information needs among cancer patients

Abstract

Introduction

Section snippets

Information need measures

Study 1: initial cross-sectional analysis

Uni-dimensionality, internal consistency and other scale findings

Study 2: replication with longitudinal data

Uni-dimensionality, internal consistency and other scale findings

General conclusion and practice implications

Acknowledgements

Soc. Sci. Med.

Patient Educ. Couns.

J. Psychosom. Res.

Information and participation preferences among cancer patients

Ann. Intern. Med.

Information needs of cancer patients in west Scotland: cross sectional survey of patients’ views

Br. Med. J.

Improving communication with cancer patients

Oncology

Living with cancer: self-identified needs of rural dwellers

Fam. Com. Health

The take home message: patients prefer consultation audiotapes to summary letters

J. Clin. Oncol.

Measuring unmet needs of people living with cancer

Cancer Forum

Effects of preparatory patient education for radiation oncology patients

Cancer

The effects of preparatory patient education on the anxiety and satisfaction of cancer patients receiving radiation therapy

Cancer Nurs.

Predictors of psychosocial adjustment in patients newly-diagnosed with gynecological cancer

Cancer Nurs.

Information needs and sources of information for woman with breast cancer: a follow-up study

J. Adv. Nurs.

Uncertainty and adjustment during radiotherapy

Nurs. Res.

Information needs and decisional preferences in woman with cancer

JAMA

Information needs of woman during early treatment for breast cancer

J. Adv. Nurs.