Documenting pathways to dementia care: Relative validity of questionnaire, interview, and medical record formats

Abstract

One of the shortcomings of the pathways-to-care literature is the lack of empirical support for the validity of the data collection methods. This study uses three common formats to collect retrospective pathways-to-care data for adults who have been diagnosed with possible or probable Alzheimer's disease (AD) and compares indicators to evaluate their relative validity. Forty family caregivers of adults diagnosed with possible or probable AD were recruited from the caregiver registry of the Boston University Alzheimer's Disease Core Center (BU ADCC). In each of three formats (questionnaire, structured interview, and medical record review), data were collected regarding four key events in the pathway to dementia care: first appearance of symptoms, first verbalized recognition of symptoms, first effort to seek professional help, and first diagnosis by a professional. In addition to the dates of these events, researchers attempted to determine: the first verbalized concern about the symptoms, who first sought professional help, what professional was first approached, and what professional made the first diagnosis. In a consensus meeting, data collected in all three formats were reviewed, and a consensus on the most likely answers to all questions was recorded and compared to data collected in each format. The results suggest that the three formats are not equivalent in terms of concurrent validity. While substantial agreement is found among data collection methods, the validity of the structured interview format and the medical record review is most consistently supported by the data in this study. Questionnaire data resulted in underestimates of delays and correlated poorly with other data sources, including the consensus judgment. Recommendations for pathways-to-care data collection procedures that maximize validity are discussed.

Help-Seeking for Dementia

“…As for the findings related to sources of help, the studies in this review consistently showed that close family members-especially spouses and children-were the first choice of a source of help 16,[26][27][28][29][30] ; followed by the family physician. The most common professional or formal source of help included in the reviewed studies was primary physicians, followed by specialists such as neurologists and psychiatrists.…”

Time to diagnosis in young-onset dementia and its determinants: the INSPIRED study

“…Previous investigations have not triangulated clinician, patient and carer perspectives of diagnostic pathways to clarify factors contributing to the time to diagnosis in YOD. Data collection techniques (questionnaire, structured interview, medical records) have varied in dementia pathway research with structured interviews and medical record review being most reliable (Drebing et al, 2004). Previous Australian studies have also been convenience samples (Luscombe et al, 1998;Speechly et al, 2008).…”

Pathway to care of epilepsy patients: Exploratory study from an urban slum in Northern India

“…[16] attempt to establish the validity of the three most commonly used methods to study dementia care namely questionnaire, structured interview, and medical record review. We used snowballing and key informant contacts to trace epilepsy patients in the community.…”