Development of a tool for patients to describe the phenomenon of suffering

The purpose of the study was to examine the psychometric properties of the Description of Suffering Instrument (DSI). The DSI is a new instrument developed form themes/categories identified through a review of the literature and from themes/categories identified in previous research endeavors in the area of suffering. The multidimensionality of the quality of life domains of physical, psychological, social, and spiritual were utilized as a conceptual framework for the development of the DSI. The DSI is a 29-item Likert scale with an open-ended question allowing for comments.

The population consisted of 284 cancer survivors who are members of a cancer volunteer organization. One hundred and fifty five questionnaires were returned for a response rate of 55%. The participants mean age in years was 58.7, (SD 11.53), mean length of time since diagnosis was 8.8 years, (SD 6.82), and over 70% were married. Seventy one percent (n = 111) were female, and 29 percent ( n = 44) were male. Breast cancer was the predominant diagnosis (66%, n = 102). The remainder of the sample had 15 different diagnoses.

Internal consistency reliability and construct validity were established for the DSI. A Cronbach's alpha of 0.9323 indicated a strong reliability. Principal components factor analysis with varimax rotation identified six factors accounting for 63.5% of the variance. These constructs were identified as existential issues, functional/physical issues, emotional issues, impact of illness, illness support issues, and family support issues.

The constructs identified by patients provided an improved knowledge base from which health care professionals can better assess and intervene in the area of suffering. The DSI needs further refinement and validity testing. A concurrent validity study utilizing a quality of life (QOL) instrument to test the relationship to QOL as well as experimental studies utilizing the DSI to examine the impact of interventions to alleviate suffering are recommended.