(3) Unique Study Tools for Quality Improvement (QI) Research in Home Parenteral Nutrition (HPN)

Background: The Amerita QI project for HPN (QIP-PN) successfully completed a 3-phase, 29-month analysis of HPN care (1) which utilized 3 unique study tools to measure quality of life (QOL) multimorbidity (MM) and qualitative assessment of benefit (QAB). These tools were needed to resolve specific problems we encountered in our QI research efforts.

Purpose: We needed a shortened QOL index that offered a single numerical result (2). We wanted to quantify MM so that patients could be compared based on disease burden. We sought to answer the “big picture” question of whether a patient benefited from therapy. In this report, we describe these study tools and offer their consideration for future QI HPN research.

Methods: The QIP-PN study reviewed cases for demographics, PN parameters, outcomes, QOL, MM and QAB. Comparisons were made between observation and intervention periods, during which a multidisciplinary nutritional support team (MNST) made HPN management recommendations to the treating physician. We used the EQ-5D-3L for QOL assessment, the Cumulative Illness Rating Scale (CIRS) for MM and a grounded theory QAB (GT-QAB). The EQ-5D-3L Visual Analogue Scale (VAS) recorded the patient’s self-rated health state (3). CIRS scores of MM were calculated based on information on 15 body systems, with a weighted score of 0-4 for each, depending on severity (4). The sum of morbidity for all 15 systems constituted the patient’s total CIRS score. Multidimensional aspects of HPN care formed the framework of the GT-QAB (5). A hypothesis on the benefit of MNST intervention was formulated for each patient and voted on by the MNST. Each professional discipline provided one vote, supporting or denying the hypothesis. If the majority voted affirmatively, a score of 1 was recorded and if majority voted against, a score of 0 was recorded.

Results: There were 30 completed study patients and 30 case-matched controls. The use of EQ-5D-3L-VAS, CIRS and GT-QAB was accomplished with minimal training of the MNST members.

Discussion: Each of the 3 unique study tools provided beneficial insight for QI HPN research. The EQ-5D-3L-VAS proved to be favorable to the HPN patient for its short assessment form. The EQ-5D-3L requires responses in only 5 categories versus 20. Our research utilized the VAS score as a surrogate for QOL for comparison between phases of the study. CIRS scoring enabled us to categorize patients based on their individual conditions and MM in addition to their HPN care. HPN patients often have concomitant medical conditions that impact their care. MM scoring provides a way for outcomes comparison. Standard monitored HPN parameters can miss the overall impact of HPN therapy. GT-QAB permitted us to obtain quantifiable information on the judgement of experienced clinicians regarding patient benefit.

Conclusions: Measurement of QOL, MM and QAB have value in homecare therapeutics. Tools such as EQ-5D-3L VAS, CIRS score and GT-QAB score should be considered for future HPN QI research.