| Literature DB >> 33057598 |
David T Rubin1, Ailsa Hart2, Remo Panaccione3, Alessandro Armuzzi4, Ulla Suvanto5, J Jasper Deuring6, John Woolcott7, Joseph C Cappelleri8, Kathy Steinberg9, Laura Wingate10, Stefan Schreiber11.
Abstract
BACKGROUND: The Ulcerative Colitis (UC) Narrative global surveys examined patient and physician perspectives on living with UC and tried to identify gaps in optimal care. Questions explored patient-physician interactions, UC management goals, and resources for improving communication.Entities:
Keywords: inflammatory bowel disease; physician-patient relationships; quality of care; shared decision-making; survey
Mesh:
Year: 2021 PMID: 33057598 PMCID: PMC8214018 DOI: 10.1093/ibd/izaa257
Source DB: PubMed Journal: Inflamm Bowel Dis ISSN: 1078-0998 Impact factor: 5.325
Key Areas Covered by the UC Narrative Global Surveys
| Key Areas of Patient and Physician Surveys* | Examples of Topics Covered by Survey Questions |
|---|---|
| Demographics† | Age, country of residence, sex |
| Diagnosis of UC | Age at diagnosis, time between symptom onset and diagnosis |
| UC symptoms | Overall health, symptoms experienced, daily bathroom visits, remission status (as considered by patients), number of flares (in the past 12 months) |
| Impact of UC | Emotional impacts of UC, family impacts of UC, work impacts of UC, missed events because of UC, top worries because of UC |
| Management of UC† | Important issues in management of UC, goal-setting (treatment and day-to-day), priorities for routine appointments |
| Treatment | Medication (ever taken, current), satisfaction with current medication, medication choices, hospital visits in the past 12 months (as reported by patients) |
| Patient-physician communication† | Satisfaction with communication, topics that patients felt physicians could better understand |
| Knowledge of UC | Disease knowledge, treatment knowledge |
| Information and support† | Patient advocacy organizations, tools to improve patient-physician relationships |
*Where applicable and appropriate, the physician questionnaire mirrored the patient questionnaire.
†Area covered in this article.
FIGURE 1.Patient and physician views on communication. Proportional weighting was used to generate global totals. Dashed lines indicate the global total.
FIGURE 2.Global patient and physician priorities for routine appointments. Patients and physicians could choose up to 3 options. The number in parentheses above each bar represents the overall patient or physician ranking for each response. Affordability of medication was not requested in France, Germany, Italy, Japan, Spain, or the United Kingdom.
FIGURE 3.The top 3 patient and physician priorities for routine appointments, by country.
FIGURE 4.Patient-physician perceptions on goals for UC management. Proportional weighting was used to generate global totals. Dashed lines indicate the global total.
Resources to Help Improve Patient Relationships, as Selected by Physicians
| Resources | Global Total* (%) | Range† (%) | Median† (%) |
|---|---|---|---|
| An online tool or smartphone application to better monitor and track patient activities and symptoms | 42 | 27-70 | 43 |
| Advice on where to get reliable information to help patients manage their disease | 39 | 29-71 | 39 |
| Longer visits | 39 | 18-60 | 40.5 |
| The ability to refer patients to chronic disease management classes | 38 | 18-59 | 39 |
| Informed resources to provide to patients | 37 | 18-64 | 33.5 |
| More information about UC in general to give to patients | 36 | 24-63 | 36.5 |
| A list of other health care professionals in my area (eg, psychologists, nutritionists, IBD nurses, rheumatologists, dermatologists) to refer to patients to aid in UC treatment | 35 | 18-59 | 34.5 |
| More information about UC treatment options available to give to patients | 35 | 18-62 | 34 |
| Clarity on patients’ personal treatment goals and whether they are meeting them | 33 | 22-59 | 39 |
| More tools to help patients prepare for physician visits (eg, list of questions to ask, informative brochures) | 33 | 12-53 | 31.5 |
| A tool explaining mechanics of UC | 31 | 18-53 | 32.5 |
| Discussion of whether patients take their medication(s) exactly as prescribed | 28 | 15-51 | 29 |
| More frequent visits | 28 | 12-38 | 25.5 |
| An IBD nurse to help with management (among patients without IBD nurses) | 21 | 0-39 | 15 |
| Other methods of communication (eg, telephone, video conversations, email) | 20 | 7-42 | 19 |
| Better access to colonoscopies | 16 | 8-32 | 18 |
| Other | 1 | 0-5 | 1 |
| Nothing would help improve patient relationships | 1 | 0-6 | 1.5 |
Physicians were asked, “In thinking about your patients with moderate to severe UC, which of the following, if any, would help improve your patient relationships?” Physicians could select any that applied from a list of 18 possible options (including “other” and “nothing”).
*Proportional weighting was used to generate global totals.
†Range and median values were calculated from individual country data.
FIGURE 5.Patient-physician communication on the importance of PAOs and the role of PAOs in the management of UC. Proportional weighting was used to generate global totals. Dashed lines indicate the global total. PAO indicates patient advocacy organization.