Abstract
The purpose of this study was to investigate the psychometric characteristics (content validity, internal consistency, and subscale structure) of the Hematology Information Needs Questionnaire-62 (HINQ-62), a patient reported outcome measure (PROM) for assessing the need for information among patients with hematological malignancies (HM-patients). Baseline data were used from a prospective study on the need for information which 336 newly diagnosed HM-patients had completed. In phase 1 (design phase), data from the first 135 patients were used and in phase 2 (validation phase), data from the remaining 201 HM patients were used. Content validity was analyzed by examining irrelevance of items. Items were considered irrelevant if more than 10% of the patients scored totally disagree on that item. The subscale structure of the HINQ-62 was investigated with Factor analysis (FA) (exploratory FA in phase 1 and confirmatory FA in phase 2). Cronbach’s α was computed for the different subscales and >.70 was considered as good internal consistency. None of the 62 HINQ-items were irrelevant. Exploratory FA identified five subscales: “Disease, symptoms, treatment and side-effects”, “Etiology, sleep and physical changes”, “Self-care”, “Medical tests and prognosis”, and “Psychosocial”. Root Mean Square Error of Approximation (RMSEA) among patients was 0.037 in phase 1 and 0.045 in phase 2. The comparative fit index (CFI)/Tucker-Lewis index -non-normed fit index among patients was 0.984/0.983 and 0.948/0.946, in phase 1 and 2 respectively. The internal consistency of the subscales was good, with Cronbach’s α 0.82–0.99. The HINQ is a valid PROM for assessing the need for information among Dutch HM-patients at diagnosis.
Highlights
To optimize personalized medicine and care in patients with hematological malignancies (HM), it is essential to know these patients’ preferences regarding information provision
On the basis of a cross-sectional study[9], we previously developed a first version a questionnaire, which comprised 92 questions regarding the need for information among HM patients.[9,10]
Using exploratory Factor Analysis (FA) and inter-item correlation, we shortened the questionnaire with 30 items, resulting in the Hematology Information Needs Questionnaire-62 (HINQ-62)
Summary
To optimize personalized medicine and care in patients with hematological malignancies (HM), it is essential to know these patients’ preferences regarding information provision. Almost 920.000 patients are diagnosed with a HM[7] and the survival rate of most of these diseases has increased.[7,8] A recent literature review showed that information needs of HM-patients have only been assessed with study specific questionnaires and that no validated HM-specific information needs questionnaire is available. This hampers the comparison of information needs of HM patients across studies and the assessment of a particular patients’ information need in clinical practice.[6] On the basis of a cross-sectional study[9], we previously developed a first version a questionnaire, which comprised 92 questions regarding the need for information among HM patients.[9,10] Subsequently, using exploratory Factor Analysis (FA) and inter-item correlation, we shortened the questionnaire with 30 items, resulting in the HINQ-62. The aim of the current study was to assess the psychometric properties (i.e. internal consistency and validity) of the HINQ-62 among newly diagnosed patients with hematological malignancies
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