Psychometric evaluation of the Caregiver Needs Screen in neuro-oncology family caregivers

Introduction: The informal care demands of brain tumour patients include various issues associated with neurological and cognitive symptoms. Caregiver needs questionnaires developed for cancer populations do not include these... [ view full abstract ]

Introduction: The informal care demands of brain tumour patients include various issues associated with neurological and cognitive symptoms. Caregiver needs questionnaires developed for cancer populations do not include these disease-specific symptoms. Therefore, we have developed the neuro-oncology Caregiver Needs Screen (CNS) and evaluated its psychometric properties.

Methods: In-depth qualitative interviews with caregivers were used to generate items, which were reviewed by experts to add or collapse items as necessary. The resulting 32-item instrument was tested in a sample of 122 neuro-oncology caregivers, along measures of depression (Center for Epidemiological Studies – Depression scale), anxiety (Profile of Mood States – Anxiety), caregiver burden (Caregiver Reaction Assessment) and mastery (Mastery Scale). Exploratory factor analysis was used to determine internal structure. Internal consistency reliability and construct validity were assessed.

Results: Six subscales were identified (neurologic symptoms; oncologic symptoms; personal communication; communicating with health care providers; resources; caregiver health). Internal consistency for the subscales ranged between α = .653 and α = .886. A floor effect was found for the personal communication subscale only. Convergent validity was verified by moderate to strong correlations between measures of caregiver wellbeing and CNS scale scores.

Discussion: Findings provide preliminary evidence of reliability and validity for the CNS as a measure of neuro-oncology caregiver distress as a result of common care issues. This instrument can prove useful in research setting as well as in clinical practice when assessing caregivers’ needs for supportive care.