Twenty-five years of advocacy for patients with gastroparesis: support group therapy and patient reported outcome tool development

Abstract

BackgroundGastroparesis (Gp) is a poorly understood chronic gastrointestinal medical condition for which patient reported outcomes (PRO) are lacking. Previously developed symptoms scoring has been used for several decades. Using symptoms scores as a basis for documentation, 12 years of support/focus group patient feedback from the nearly 1000 attendees were integrated with medical care and recommendations for treatment were developed. Early attenders of the support group were compared with non-attendees for illness acuity, disability, and duration and number of office phone calls.MethodsPatients cared for in an academic medical practice were assessed for patient-derived PRO symptoms, coupled with standardized Health Related Quality of Life (HRQOL) measures. Based on factors identified by the patients via support/focus groups, a diagnostic and prognostic tool was developed.ResultsThe new tool utilized PRO symptoms and included provider assessments of medical illnesses as well as resource utilization. This ‘post PRO’ tool has been applied in a variety of settings for patients with the symptoms of Gp over the last two decades. The ‘pre-PRO’ factors from the support/focus groups were compared to the PRO measures as well as the ‘post-PRO’ scale to assess their usefulness. Using methods that combine chart data, including electronic medical records (EMR), with PRO symptoms may have design implications for PRO assessment. The resultant scales, as part of a new tool, can allow for sharing of PRO derived scores in a chronic gastrointestinal (GI), illness with different practitioners.ConclusionsThese newly-derived scales offer a potentially useful tool for clinical decision-making, tailoring treatment to patient subgroups and engaging both patients and their families and caregivers in more active partnerships with providers to improve health outcomes.Electronic supplementary materialThe online version of this article (doi:10.1186/s12876-016-0523-3) contains supplementary material, which is available to authorized users.

Intravenous immunoglobulin in drug and device refractory patients with the symptoms of gastroparesis—an open‐label study

“…In our study population, one of five patients with positive GAD‐65 antibody had diabetic Gp while rest (80%) had idiopathic Gp. This is different from a study by Dhamija et al who reported 22% frequency of GAD antibody positivity in idiopathic achalasia patients compared to 2.3% among 171 controlled age‐matched subjects with only one patient with GAD positivity had DM …”

“…This is different from a study by Dhamija et al 39 who reported 22% frequency of GAD antibody positivity in idiopathic achalasia patients compared to 2.3% among 171 controlled age-matched subjects with only one patient with GAD positivity had DM. 24,39 Histological evidences of gastric enteropathies in Gp patients are not extensive but have now been defined. Recent advances in the field of GI motility disorders have generated considerable attention toward autonomic enteropathies.…”

“…Upper GI symptom scores were recorded by a five‐component PRO system, nausea, vomiting, early satiety, abdominal pain, and postprandial fullness—as recommended by the FDA for clinical trials and similar system was extrapolated to be used for lower GI symptoms. Symptoms of nausea, vomiting, abdominal pain, early satiety, postprandial fullness, constipation, and diarrhea and urinary symptoms were reported on 5‐point scale of 0‐4 with 4 being worst . The scores were reported before and after the completion of 12‐week IVIG treatment.…”

“…Symptoms of nausea, vomiting, abdominal pain, early satiety, postprandial fullness, constipation, and diarrhea and urinary symptoms were reported on 5-point scale of 0-4 with 4 being worst. 23,24 The scores were reported before and after the completion of 12-week IVIG treatment. All patients were asked to maintain symptom diaries to note symptom score every week to reduce recall bias.…”

The Effect of Gastric Electrical Stimulation on Small Bowel Motility in Patients With Gastroparesis and Concomitant Pancreatic and Small Bowel Dysfunction: From Animal Model to Human Application

“…Baseline patient‐reported symptom scores were recorded using a standardized questionnaire during a clinic visit prior to temporary stimulator placement. Illness severity scores (IDIOMS) were calculated using a composite of clinician‐determined illness severity, number of organ systems involved, and the intensity of services utilized, similar to the factors used in Medicare DRGs . Four‐hour gastric emptying times (via scintigraphy) and resting cutaneous EGG also were recorded prior to temporary GES placement.…”