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Patient satisfaction in the management of mild-to-moderate ulcerative colitis: Results of a Delphi study among patients and physicians

Digestive and Liver Disease, Volume 48, Issue 10, October 2016, Pages 1172 - 1179

Abstract

Goals

To determine factors contributing to satisfaction with treatment in mild-to-moderate ulcerative colitis (UC) from both the patients and the physicians perspectives.

Background

Despite the impact of UC on different aspects of daily life, patient's and physician's satisfaction with clinical management has been poorly evaluated.

Study

A Delphi study involving 22 patients and 20 clinicians was conducted. The patient's questionnaire included 285 items regarding diagnosis, treatment, and follow-up, whereas the physician's questionnaire added 32 specific items for clinicians. Relevance of items was scored from 1 (not at all important) to 9 (very important). Recommendations were based on very highly rated items.

Results

Most items were rated consistently by patients and physicians with some exceptions. Patients emphasized the choice of moderate flare-ups to be followed at the hospital setting rather than in primary care as well as to be informed on aspects, such as diet and impact of UC on their health and lifestyle. Treatment-related efficacy, safety, and improved quality of life were relevant for both patients and physicians. Physicians believed that to reduce pill burden was a crucial aspect to improve patient's satisfaction. Patients preferred oral administration treatment over rectal treatment.

Conclusions

The study identified specific aspects related to the management of mild-to-moderate UC that both patients and physicians considered to be highly relevant for patient satisfaction. Recommendation based on these factors would be important at the time of designing and implementing strategies targeting satisfaction in UC patients.

Keywords: Delphi method, Patient's satisfaction, Quality of care, Quality of life, Recommendations, Ulcerative colitis.

1. Introduction

Ulcerative colitis (UC) is a clinically relevant disease with a substantial impact on the quality of life of affected persons and cost burden for health care systems, particularly in industrialized countries [1], [2], and [3]. Despite extensive knowledge of the different pathologic, diagnostic, and therapeutic aspects of the disease, patient-reported outcomes, including satisfaction with clinical management or drug treatment have been poorly evaluated [4] and [5]. Some hospitals, aware of the need for a multidisciplinary approach, have created UC care units that include health education programmes, nursing care, specialized outpatient units, or telemedicine resources [5], [6], and [7]. Additionally, quality standards for care and management of the disease have been recently developed [8] and [9].

Control of symptoms and improvement in the quality of life are major patient's expectations from treatment. However, patients are often dissatisfied with what they perceived as insufficient symptom control. Disease-related complications and side effects of treatment during the course of illness contribute to increase patient dissatisfaction. Therefore, it is essential to ascertain patient's perception and the degree of satisfaction with the management of the disease.

This Delphi study was designed to identify factors associated with patient's satisfaction of UC management by a better understanding how patients and physicians perceive relevant aspects related to treatment of the disease. Factors identified may contribute to establish recommendations to improve satisfaction of UC patients. UC is a disease that varies substantially in severity from mild to severe [10]. In this study, patients with mild-to-moderate UC were selected.

2. Materials and methods

A cross-sectional study using Delphi method [11] was designed for physicians and patients separately.

2.1. Delphi process for physicians

A first draft of the questionnaire for physicians was developed using qualitative results of a UC patient discussion group [12] and data collected from an extensive review of the literature [13], [14], [15], [16], [17], [18], and [19] centred on factors affecting patient's satisfaction with UC management. The draft was reviewed by the scientific committee of the project composed of three gastroenterologists (FC, DG, and SR) with considerable experience in the management of UC. After including suggestions of the scientific committee, the first-round questionnaire included 254 items divided into the sections of (1) UC diagnostic process, (2) UC follow-up, (3) UC treatments in general, (4) characteristics of specific treatment with mesalazine, immunomodulating drugs, and corticosteroids, and (5) comments. Twenty gastroenterologists and 2 general practitioners selected by the scientific committee and distributed throughout Spain were invited to participate in the study and all of them agreed. A 5-page questionnaire compiled in an Excel template, with an introduction and instructions on filling out the questionnaire was sent by email to each participant. For each item, panel members used a 9-point scale (from 1 = not important at all [not relevant at all] to 9 = very important [very relevant]) [11] to rate how important they believe that each item was for the patient's satisfaction with UC management.

The median values and the distribution of responses to the first-round questionnaire were summarized. In the second round, each member of the panel received a second questionnaire, which included 290 items divided into the following sections: (1) UC diagnostic process (23 items), (2) UC follow-up (58 items), (3) UC treatment in general (63 items), (4) treatment with mesalazine (50 items), (5) treatment with immunomodulating drugs (47 items), (6) treatment with corticosteroids (49 items), and (7) suggestions. Questionnaires were also sent by Members were asked to score each item again according to his/her previous judgements or to modify them on the basis of the participants’ responses.

2.2. Delphi process for patients

To be included in the study, patients had to fulfil the following criteria: 18 years of age or older, having being diagnosed of UC for at least one year, current remission status according to Mayo index [20], mild-to-moderate severity of disease, discontinuation of systemic corticosteroid treatment for one year, and disease naïve to biologic therapy. Each participating physician selected one or two eligible patients from their own hospital files. Patients were fully informed about the characteristics of the study and invited to take part by telephone or electronic mail. Of a total of 29 patients who were approached, 20 agreed to participate and signed the written informed consent. Eighteen patients preferred to receive the study questionnaire by electronic mail and the remaining 3 preferred a printed copy delivered by post.

The first-round questionnaire was developed using the same methodology and structure than the first-round questionnaire for physicians, although items potentially relevant for patients were included and those potentially irrelevant were deleted. The language was adapted to be easily understood by a patient with an average reading level. The final first draft questionnaire also included 254 items divided into the same five sections as in the case of the physicians’ questionnaire. However, in relation to treatment-specific items, only answers of those patients who reported familiarity with such treatments in a previous question were considered. Items were also rated using a 9-point scale (1 = not important at all [not relevant at all] to 9 = very important [very relevant]) [11].

Again, the median values and the distribution of responses to the first-round questionnaire were summarized. Suggestions made by the panel of physicians in their first Delphi round were added, so that responses provided by patients and physicians to these new items could be compared. The second-round patient's questionnaire included 258 items organized into the following sections: (1) UC diagnostic process (22 items), (2) UC follow-up (54 items), (3) UC treatment in general (57 items), (4) treatment with mesalazine (43 items), (5) treatment with immunomodulating drugs (40 items), (6) treatment with corticosteroids (42 items), and (7) suggestions. All questionnaires were personalized and were all returned properly completed before the end of July 2013.

2.3. Analysis and recommendations

The median score for each item and the degree of agreement among the panel members (physicians or patients) was calculated. The degree of agreement was classified as agreement or disagreement according to the Interpercentile Range Adjusted for Symmetry (IPRAS) method [11].

Items were considered to be of ‘very highly relevance’ when the median score of the panel was >8 and there was agreement, ‘high relevance’ when the median score was 7–8 and there was agreement, ‘medium relevance’ when the median score was ≥4 but <7 and there was agreement. ‘Medium relevance’ was also considered in the presence of disagreement, that is, when one third of the panel assigned high relevance and the other third assigned low relevance (median score < 4 with agreement). Concordance between physicians and patients was categorized as ‘yes’ or ‘no’ when the item was classified or not into the same degree of relevance.

Recommendations included those items scored as very highly relevant by physicians and those items scored as very highly relevant by both physicians and patients. Similar recommendations were synthesized into a single one to avoid duplication.

3. Results

The panel of patients included 13 men and 7 women, with a median age of 46 years (range 25–58 years) and from six different Spanish regions. Three patients were managed in the primary care setting and the remaining patients in the outpatient clinics of hospitals. Three patients were not taking medication at the time of inclusion in the study.

The distribution of 20 patients according to the use and whether they were familiar with Mesalazine, Inmunomodulator treatment and Corticosteroids was classified in four categories (1) currently taking the medication, (2) has taken the medication, (3) has not taken it, but familiar with it, and (4) has not taken and unfamiliar with it. The distribution and knowledge with mesalazine was: 13 who were currently taking it (65%), 4 have taken it (20%), 0% has not taken it, but familiar with it and 3 patients have not taken and unfamiliar with it (15%). The distribution and knowledge with Inmunomodulators was: 4 currently taking it (20%), 1 has taken it (5%), 4 patients have not taken it, but familiar with it (20%) and 11 has not taken and unfamiliar with it (55%). The distribution and knowledge with corticosteroids was there were no patients currently taking it, 17 patients have taken it (85%), 1 has not taken it, but familiar with it (5%) and 2 patients have not taken and unfamiliar with it (10%).

Satisfaction related to the diagnostic process according to physicians and patients is detailed in Table 1. In general, the relevance of the items was considered very high or high by both physicians and patients, although in eight items concordance was not achieved.

Table 1

Satisfaction related to the diagnostic process in ulcerative colitis (UC) according to physicians and patients.

 

Items Physicians Patients Concordance
Median Relevance Median Relevance
To have a UC early diagnosis protocol in place at primary care 7.5 High 8.0 High Yes
Doctors in primary care should be trained in early detection of UC 8.0 High 9.0 Very high No
PC patients clinically suspected of suffering UC should be referred to:
 The specialist at outpatient clinic 8.0 High 7.0 High Yes
 The gastroenterology specialist at the hospital 8.0 High 8.5 Very high No
The visit to inform patients about results of diagnostic tests should take place as soon as possible 9.0 Very high 9.0 Very high Yes
Presentation of symptoms indicative of UC requires:
 Colonoscopy 9.0 Very high 9.0 Very high Yes
 Proctosigmoidoscopy 8.0 High NA
 Routine laboratory tests 9.0 Very high 8.0 High No
 Specific blood tests (e.g. CRP) 8.5 Very high 9.0 Very high Yes
 Specific faecal tests (calprotectin) 7.0 High 9.0 Very high No
Minimize delays in diagnostic testing to avoid unnecessary hospital admissions 9.0 Very high 9.0 Very high Yes
After a confirmed diagnosis, UC patients should be informed regarding:
 Disease course (e.g. chronicity) 9.0 Very high 9.0 Very high Yes
 UC episode management 9.0 Very high 9.0 Very high Yes
 UC treatments 9.0 Very high 9.0 Very high Yes
 Diet 8.0 High 9.0 Very high No
 Impact on overall health 8.0 High 9.0 Very high No
 Impact on daily life (e.g. social impact) 8.0 High 9.0 Very high No
 Control strategies in daily life 8.0 High 9.0 Very high No
 Psychological support 7.0 High 7.5 High Yes
 Patient associations and support groups 7.0 High 7.0 High Yes
Nursing should provide services such as:
 Inform patients about UC 7.0 High 7.0 High Yes
 Educate UC patients regarding health lifestyle 8.0 High 7.5 High Yes
 Educate patients regarding UC management 7.0 High 7.5 High Yes

Table 2 shows the results of satisfaction related to follow-up scored by physicians and patients. Location of follow-up in the primary care setting was rated as medium or low relevance by physicians but the relevance of the remaining items were rated as high or very high. Patients were in agreement in all items regarding follow-up, except in three. In addition to the three items above receiving a score of medium relevance due panel disagreement, six items were scored as being of medium relevance with agreement. The rest of items related to follow-up were given scores of high or very high relevance. Physicians and patients assigned different scores to 15 of the follow-up -related items: 6 items were classified as more relevant by the physicians and 9 items were considered more relevant by the patients’ panel.

Table 2

Satisfaction and follow-up-related factors according to physicians and patients.

 

Factors Physicians Patients Concordance
Median Relevance Median Relevance
Location of follow-up
 Follow-up of mild episodes to be performed by
  Primary care services 5.0 Medium 6.5 Medium Yes
  Outpatient clinics (specialist) 7.0 High 7.0 High Yes
  At the hospital 7.5 High 7.5 High Yes
 Follow-up of moderate episodes to be performed by
  Primary care services 3.0 Low 6.0 Medium No
  Outpatient clinics (specialist) 6.5 Medium 7.0 High No
  At the hospital 9.0 Very high 9.0 Very high Yes
 Follow-up of UC on remission to be performed by
  Primary care services 5.0 Medium 6.5 Medium Yes
  Outpatient clinics (specialist) 7.0 High 8.0 High Yes
  At the hospital 8.0 High 8.5 Very high No
 IBD units or specialized outpatient units, when available, should be in charge of controlling:
  Mild UC 8.0 High 8.0 High Yes
  Moderate UC 9.0 Very high 9.0 Very high Yes
 Patient's active role in treatment decisions 8.0 High 8.0 High Yes
 When facing complex treatment decisions (e.g. colectomy)
  Patient should be given the opportunity to get a second opinion 9.0 Very high 9.0 Very high Yes
  Physicians should organize multidisciplinary clinical rounds 9.0 Very high NA
 Primary care (PC)
  PC should have UC follow-up protocols in place 7.5 High 7.0 High Yes
  PC physicians must be trained in UC management 8.0 High NA
  PC physicians should have access to UC specialist for questions regarding disease management 8.0 High 9.0 Very high No
  When a patient is followed-up by PC, direct referral to a specialist should be possible whenever general physician deems it necessary 9.0 Very high 9.0 Very high Yes
  PC should have access to the patient's medical record 8.0 High 9.0 Very high No
 Physicians responsible for the follow-up
  Patients should be followed by gastroenterologists 9.0 Very high 9.0 Very high Yes
  Patients should be followed by nurses 7.5 High 6.5 Medium No
  The frequency of controls should meet the patient's clinical needs 9.0 Very high 9.0 Very high Yes
  Physician–patient relationship should be built on mutual trust 9.0 Very high 9.0 Very high Yes
  Physicians should take patient's opinion into consideration 9.0 Very high 9.0 Very high Yes
 UC management by other specialists
  Consult to other specialists for UC-related complications should be prompt 9.0 Very high 9.0 Very high Yes
  Disease management protocols should be used for the care of UC patients in the emergency services 8.0 High 9.0 Very high No
  Emergency services should have access to the patient's medical history 9.0 Very high 9.0 Very high Yes
  Emergency services should have access to the patient's specialist or gastroenterology department in charge of the patient 9.0 Very high 9.0 Very high Yes
 Duration of visits
  A minimum 30-min first visit with the specialist managing UC 8.0 High 7.5 High Yes
  A minimum 10-min first visit with the nurse managing UC 7.5 High 5.0 Medium No
  Minimum 15-min follow-up visits with the specialist managing UC 8.0 High 5.0 Medium No
  Minimum 15-min follow-up visits with the nurse managing UC 7.0 High 5.0 Medium No
 Medical attention on demand and telemedicine
 Gastroenterology department or inflammatory bowel disease (IBD) unit should provide medical attention on demand
  To attend patient's questions 8.0 High 8.0 High Yes
  In case of recurrence 9.0 Very high 9.0 Very high Yes
 Information through telemedicine should be provided by a gastroenterologist 7.5 High NA
 Nursing should have access to a physician when given information through telemedicine High High High High High
Offer telemedicine services for:
 Making appointments 8.0 High 8.0 High Yes
 Answering questions 8.0 High 8.5 Very high No
 Providing results of routine tests 8.0 High 8.5 Very high No
Nursing should manage telemedicine services 8.0 High 7.0 High Yes
 
Medical attention on demand and telemedicine
 Telemedicine should be offered through:
  Telephone 9.0 Very high 9.0 Very high Yes
  Electronic mail 8.0 High 8.0 High Yes
 Normal results of tests such as those below should be informed by telephone
  Colonoscopy 7.0 High 7.5 High Yes
  Routine laboratory tests 8.0 High 7.0 High Yes
  Specific blood tests (e.g. CRP) 8.0 High 7.5 High Yes
  Specific faecal tests (calprotectin) 8.0 High 7.0 High Yes
 Normal results of tests such as those below should be sent to patients by e-mail
  Colonoscopy 7.0 High 7.0 High Yes
  Routine laboratory tests 7.0 High 7.0 High Yes
  Specific blood tests (e.g. CRP) 7.0 High 6.5 Medium No
  Specific faecal tests (calprotectin) 7.0 High 6.0 Medium No
  Telemedicine should be offered from Monday to Friday during visit hours 8.0 High 7.5 High Yes
 Other
 Patients must be given support and information on:
  Diet and nutrition 8.0 High 8.5 Very high No
  Anxiety and stress management 8.0 High 8.0 High Yes
  Psychological support 8.0 High 8.0 High Yes
  Waiting rooms should have restrooms 8.5 Very high 9.0 Very high Yes
 Restrooms in waiting rooms should be:
  Accessible 9.0 Very high 9.0 Very high Yes
  Clean 9.0 Very high 9.0 Very high Yes
  Have running water and paper 9.0 Very high 9.0 Very high Yes

Table 3 shows the results of satisfaction related to factors involved in the management of UC according to the physicians’ and patients’ opinions. Physicians and patients showed concordance in most of the items regarding effectiveness of treatment, effect of treatment on the quality of life, different aspects for improving adherence to medication, and information about treatment. To improve patient's comfort, physicians and patients rated differently the items of reducing the number of doses, number of pills, pill size, and the route of administration, in which case patients placed emphasis on the preference of the oral route instead of the rectal route for drug administration (Fig. 1). Also, there was agreement in the item that information regarding treatment should ideally be provided orally or orally and in writing. Physicians’ and patients’ ratings regarding satisfaction related to improvement of compliance with treatment are shown in Fig. 2.

Table 3

Satisfaction and treatment-related factors according to physicians and patients.

 

Factor Physicians Patients Concordance
Median Relevance Median Relevance
Primary care (PC) should have UC follow-up protocols in place 7.5 High 8.5 Very high No
PC doctors should be trained in the treatment of UC 8.0 High NA
 Regarding effectiveness, treatment should:
  Control bowel movements 9.0 Very high 9.0 Very high Yes
  Eliminate rectal bleeding 9.0 Very high 9.0 Very high Yes
  Promptly relief pain 9.0 Very high 9.0 Very high Yes
  Achieve episode remission 9.0 Very high 9.0 Very high Yes
  Prevent flare-ups 9.0 Very high 9.0 Very high Yes
  Avoid the need of a colectomy 9.0 Very high 9.0 Very high Yes
  Improve quality of life 9.0 Very high 9.0 Very high Yes
  Reduce excess gas 8.0 High 9.0 Very high No
  Reduce bloating 7.5 High 9.0 Very high No
 Regarding safety, treatment should have:
  Few short-term adverse effects 8.5 Very high 9.0 Very high Yes
  Few long-term adverse effects 9.0 Very high 9.0 Very high Yes
  A favourable risk-benefit ratio 9.0 Very high NA
 To increase patient comfort, treatment should:
  Lower dose frequency 9.0 Very high 8.0 High No
  Lower number of tablets 9.0 Very high 7.5 High No
  Decrease table size 8.0 High 6.5 Medium No
  Be administered orally 8.0 High 9.0 Very high No
  Avoid rectal route 7.0 High 9.0 Very high No
 Recommend how to compensate for immunosuppression caused by certain treatments 7.5 High 8.5 Very high No
 Recommend how to compensate for other specific treatment-related adverse effects 8.0 High 8.5 Very high No
 Referral to specialist if adverse effects appear 8.0 High NA
 To improve adherence to treatment:
  Minimize number of medications 8.0 High 8.0 High Yes
  Minimize number of doses 8.5 Very high 8.0 High No
  Minimize number of pills 8.0 High 8.0 High Yes
  Reduce pill size 8.0 High 7.5 High Yes
  Be administered orally 8.0 High 9.0 Very high No
  Be administered rectally 5.0 Medium 2.0 Low No
  Have few short-term adverse effects 8.0 High 9.0 Very high No
  Have few long-term adverse effects 9.0 Very high 9.0 Very high Yes
  Have a favourable risk-benefit ratio 9.0 Very high NA
  Make it compatible with patient's daily life 8.5 Very high 9.0 Very high Yes
  Should provide information about prescribed drugs 9.0 Very high 9.0 Very high Yes
  Should provide information about prescribed drugs’ complications 9.0 Very high 9.0 Very high Yes
  Should provide information about UC 9.0 Very high 9.0 Very high Yes
  Allow patients to participate in decision making 9.0 Very high 8.5 Very high Yes
  Teach patient strategies to remember taking the medication properly 8.0 High NA
 Regarding quality of life, treatment should:
  Achieve bowel movement control 9.0 Very high 9.0 Very high Yes
  Get rectal bleeding stop 9.0 Very high 9.0 Very high Yes
  Manage pain 9.0 Very high 9.0 Very high Yes
  Achieve episode remission 9.0 Very high 9.0 Very high Yes
  Prevent flare-ups 9.0 Very high 9.0 Very high Yes
  Avoid colectomy 9.0 Very high 9.0 Very high Yes
  Have few short-term adverse effects 9.0 Very high 9.0 Very high Yes
  Have few long-term adverse effects 9.0 Very high 9.0 Very high Yes
  Make it compatible with patient's daily life 9.0 Very high 9.0 Very high Yes
 Primary care (PC) should have UC follow-up protocols in place 7.5 High 8.5 Very high No
 PC doctors should be trained in the treatment of UC 8.0 High NA
 Regarding effectiveness, treatment should:
  Control bowel movements 9.0 Very high 9.0 Very high Yes
  Eliminate rectal bleeding 9.0 Very high 9.0 Very high Yes
  Promptly relief pain 9.0 Very high 9.0 Very high Yes
  Achieve episode remission 9.0 Very high 9.0 Very high Yes
  Prevent flare-ups 9.0 Very high 9.0 Very high Yes
  Avoid the need of a colectomy 9.0 Very high 9.0 Very high Yes
  Improve quality of life 9.0 Very high 9.0 Very high Yes
  Reduce excess gas 8.0 High 9.0 Very high No
  Reduce bloating 7.5 High 9.0 Very high No
 Regarding safety, treatment should have:
  Few short-term adverse effects 8.5 Very high 9.0 Very high Yes
  Few long-term adverse effects 9.0 Very high 9.0 Very high Yes
  A favourable risk-benefit ratio 9.0 Very high NA
 To increase patient comfort, treatment should:
  Lower dose frequency 9.0 Very high 8.0 High No
  Lower number of tablets 9.0 Very high 7.5 High No
  Decrease table size 8.0 High 6.5 Medium No
  Be administered orally 8.0 High 9.0 Very high No
  Avoid rectal route 7.0 High 9.0 Very high No
 Recommend how to compensate for immunosuppression caused by certain treatments 7.5 High 8.5 Very high No
 Recommend how to compensate for other specific treatment-related adverse effects 8.0 High 8.5 Very high No
 Referral to specialist if adverse effects appear 8.0 High NA
 To improve adherence to treatment:
  Minimize number of medications 8.0 High 8.0 High Yes
  Minimize number of doses 8.5 Very high 8.0 High No
  Minimize number of pills 8.0 High 8.0 High Yes
  Reduce pill size 8.0 High 7.5 High Yes
  Be administered orally 8.0 High 9.0 Very high No
  Be administered rectally 5.0 Medium 2.0 Low No
  Have few short-term adverse effects 8.0 High 9.0 Very high No
  Have few long-term adverse effects 9.0 Very high 9.0 Very high Yes
  Have a favourable risk-benefit ratio 9.0 Very high NA
  Make it compatible with patient's daily life 8.5 Very high 9.0 Very high Yes
  Should provide information about prescribed drugs 9.0 Very high 9.0 Very high Yes
  Should provide information about prescribed drugs’ complications 9.0 Very high 9.0 Very high Yes
  Should provide information about UC 9.0 Very high 9.0 Very high Yes
  Allow patients to participate in decision making 9.0 Very high 8.5 Very high Yes
  Teach patient strategies to remember taking the medication properly 8.0 High NA
 Regarding quality of life, treatment should:
  Achieve bowel movement control 9.0 Very high 9.0 Very high Yes
  Get rectal bleeding stop 9.0 Very high 9.0 Very high Yes
  Manage pain 9.0 Very high 9.0 Very high Yes
  Achieve episode remission 9.0 Very high 9.0 Very high Yes
  Prevent flare-ups 9.0 Very high 9.0 Very high Yes
  Avoid colectomy 9.0 Very high 9.0 Very high Yes
  Have few short-term adverse effects 9.0 Very high 9.0 Very high Yes
  Have few long-term adverse effects 9.0 Very high 9.0 Very high Yes
  Make it compatible with patient's daily life 9.0 Very high 9.0 Very high Yes
gr1

Fig. 1

Relevance to patient's satisfaction of factors related to treatment comfort.

 

gr2

Fig. 2

Relevance to patient's satisfaction of factors related to adherence with treatment.

 

Final recommendations regarding the diagnostic process, follow-up, and management of UC are shown in Table 4.

Table 4

Recommendations.

 

To improve satisfaction of patients with mild-to-moderate ulcerative colitis (UC) related to the diagnostic process
 • Primary care doctors should be trained in the early detection of UC.
 • Primary care patients clinically suspected of suffering UC should be referred to the hospital specialist.
 • The visit to inform patients about the results of diagnostic tests should be as soon as possible.
 • Presentation of symptoms indicative of UC requires a colonoscopy, C-reactive protein (CRP) and calprotectin testing.
 • Minimize delays in diagnostic testing to avoid unnecessary hospital admissions.
 • After a confirmed diagnosis, UC patient should be provided information regarding the disease evolution (e.g., chronicity), episode management, treatments, diet, impact on health overall and in daily life (e.g., social impact), and control strategies in daily life.
 
To improve satisfaction of patients with mild-to-moderate ulcerative colitis (UC) related to the follow-up
 • UC patients should be followed-up by hospital services.
 • Patients with moderate UC should be followed-up by inflammatory bowel disease (IBD) units or specialized outpatient units, when available.
 • When facing complex treatment decisions (e.g., colectomy), patients should be given a second opinion opportunity. Physicians should organize multidisciplinary clinical rounds.
 • Primary care physician should have access to UC specialists for consult regarding disease management (e.g., treatments, symptoms).
 • When a patient is controlled by PC, direct referral to a specialist should be possible whenever the general practitioner deems it necessary.
 • Primary care physicians should have access to patient's medical history.
 • Patients should be followed-up by gastroenterologists.
 • Frequency of check-ups should meet patient's clinical needs.
 • Physician–patient relationship should be built on mutual trust.
 • Physicians should take patient's opinion into consideration.
 • Consults to other specialists for UC-related complications should be prompt.
 • Disease management protocols should be used to care for UC patients in emergency services.
 • Emergency services should have access to patients’ medical history.
 • Emergency services should have access to patients’ specialist or gastroenterology department in charge of the patient.
 • Gastroenterology department or IBD unit should provide medical attention on demand in the event of an episode or bout.
 • Telemedicine should be available for patients’ questions and information regarding results of routine tests.
 • Telemedicine over the telephone should be available.
 • Patients should have access to nutrition-related information and assistance.
 • Waiting rooms should have restrooms.
 • Restrooms in waiting rooms should be accessible, clean, and provide running water and paper.
 
To improve satisfaction of patients with mild-to-moderate ulcerative colitis (UC) related to management of the disease
 • Primary care services should have a UC treatment management protocol.
 • Rectal administration of treatment should be substituted by the oral route when feasible.
 • Strategies to overcome the immunosuppression caused by certain treatments should be offered.
 • Strategies to prevent adverse effects specific to certain treatments should be offered.
 • Treatment should adapt to patient's daily life needs.
 • Patient should be informed about their prescribed drugs and their possible complications.
 • Patients should be part of the decision-making process.
 • Treatment information should include administration method, dosage, short- and long-term adverse effects, contraindications with other conditions, interactions with other treatments, and pregnancy-related contraindications.
 • Check-ups should be performed during the duration of the treatment.
 • Treatment information should be provided both orally and in writing to all patients, in complete form, and according to the patient's educational and reading level.
 • Normal results from treatment follow-up tests (blood count, liver and renal function) should be sent to patients via electronic mail or by telephone.

4. Discussion

The objective of this Delphi study was to identify factors related to different aspects of the care of patients with UC that may be relevant or highly relevant, both from the physicians and patients perspectives, to improve satisfaction. Based on a two-round Delphi technique, a set of recommendations applicable to the diagnostic process, follow-up, and treatment could be established, which in turn may improve the understanding of the patients’ preferences, optimize their follow-up as well as improve adherence and effectiveness of treatment. Because the study focused on patient's satisfaction, recommendations were developed giving greater weight to the perceptions of patients over those of physicians. On the other hand, this type of studies are necessary, as in a previous report it has shown that the opinion of physicians regarding what UC patients experience differ substantially from the patients’ perceptions of both disease impact and treatment [21]. In fact, a 40% concordance between physicians and patients was found in the present study. Any relevant factor from the patient's perspective may help, for example, to improve UC treatment adherence to salicylates, which is known to reduce the number of episodes and disease-related costs [22] and [23].

In terms of factors related to the type of doctor or health care services preferred for UC management, patients found more relevant to their satisfaction that, while in remission, the follow-up be done at the hospital whereas doctors perceived no difference in patient satisfaction between doing the follow-up at the hospital and at an outpatient clinic. Similarly, when UC is suspected at a primary care facility, patients granted higher relevance to being referred to the gastroenterologist at the hospital. In contrast, doctors consider it more relevant that patients be followed by the same nurse than patients did. In regards to the duration of visits to healthcare professionals, doctors found it important to ensure a minimum duration in all visits to specialists and nurses, whereas patients placed higher relevance on securing a minimum amount of time during the first visit to the specialist than in the rest of medical visits. This is likely to reflect the patient's desire for time to be listened, to fully understand the disease, the treatments, prognosis, and complications that may ensue. During subsequent visits, the patient's main concern was being updated on how the disease is evolving.

The continuity of care between different health care services was also found to be a very important aspect to patient satisfaction. Both physicians and patients consider important for primary care and emergency services to have access to patient medical records and to the UC specialist in case of questions related to the disease management. Physicians and patients find it relevant that primary care physicians may refer a patient to the specialist when deemed necessary. These findings are similar to those of previous studies suggesting that physicians at the primary care setting often feel uncomfortable providing care to patients with inflammatory bowel disease (IBD), mainly due to lack of familiarity with drug protocols [24]. Further, IBD patients are significantly less likely to receive preventive health services such as vaccines, blood pressure, or cholesterol checks than other primary care patients [25]. Both physicians and patients considered receiving an early UC diagnosis and prompt diagnostic testing highly relevant, mainly to avoid unnecessary hospital admissions. They also highly valued promptness in medical consultations with specialists.

In the section of treatment-related factors, physicians believe that patient satisfaction may improve by reducing the number of daily doses, the number of pills, and the pill size. In contrast, tone of the most relevant aspect for patients was to use the oral route rather than the rectal route for the administration of drugs.

Overall, both patients and physicians think that keeping patients informed is important for their satisfaction. However, patients deem it more relevant than physicians to be provided with information on specific aspects, such as diet, UC impact on overall health and daily life, or interactions with other treatments. Both groups agreed that information should be given orally and in writing. However, patients, more so than doctors, emphasize the importance of informing all of the patients instead of only those who request the information. Both groups also agreed that providing normal results from diagnostic tests by telephone or electronic mail is relevant for patient satisfaction. Specifically, patients express a preference for receiving this information via telephone, whereas doctors fail to show a strong preference for either method.

Among the strengths of the current study is worth mentioning that the questionnaire was developed based on qualitative findings gathered from a patient focus group on factors affecting their satisfaction with UC management [12]. Thus, the questionnaire used in this Delphi study reflects all relevant factors concerning UC patient satisfaction. Further, doctors were not asked about how relevant these factors were for them as health care professionals but, instead, for their opinion on how relevant each item was for patient satisfaction considering the patient perspective. We find it of key importance that both patients and their physicians provided their opinion on the same issues since these two groups are not always in agreement [26]. Another strength of this work is the robust methodology [11] used to measure the degree of agreement among panel members that have been previously used among experts in the field of gastroenterology [27] and other medical specialties [28] and [29]. In addition, the agreement level was very high: doctors scored all items in agreement, and patients disagreed only in the scoring of five items. The representativeness of the doctor and patient panel members and the number of patients who agreed to participate in the study may be seen as a potential limitation. It should be noted that a major limitation of the patient's opinions is that they were asked the questions when they were doing well (mild-to-moderate UC). In this case, the level of satisfaction to certain questions would be influenced by their current disease state. However, based on the diverse profiles of the physician and patient panellists and the high degree of agreement among them, we are confident that results from panels composed by members with appropriate profiles would have been very similar.

In summary, the recommendations here developed may contribute to improve patient's satisfaction with management of UC, which may result in better adherence to treatment and quality of life. There is evidence that factors such as the information received by patients, drug administration protocols, medical visit scheduling, and doctor–patient relationship affect adherence to treatment [30] and [31]. This in turn, would increase the clinical outcomes since risk of recurrence increases with lack of adherence to prescribed medication. These recommendations can be useful to design strategies aimed at improving satisfaction of UC patients, which may also contribute to a more effective and higher quality of care.

Conflict of interest

None declared.

Acknowledgments

The authors are grateful to the physicians who kindly participated in the expert panel: Manuel Castro, Hospital Virgen de Valme, Sevilla; Ana Trapero, Hospital Ciudad de Jaén, Jaén; Valle García Sánchez, Hospital Reina Sofía, Córdoba; Silvia Chacón, Hospital Morales Meseguer, Murcia; David Monfort, Hospital Consorci Terrassa, Terrassa, Barcelona; Margarita Menacho, Hospital Juan XXIII, Tarragona; Virginia Robles, Hospital Universitari Vall d’Hebron, Barcelona; Pilar Canelles, Hospital General de Valencia, Valencia; Marisa Iborra, Hospital La Fe, Valencia; Sam Khorrami, Hospital Son Espases, Palma de Mallorca; Ramón Pajares, Hospital Infanta Sofía, Madrid; Begoña Casis, Hospital Universitario 12 de Octubre, Madrid; Raquel García Castellanos, Fundación Jiménez Díaz, Madrid; Elena Garrido, Hospital Ramón y Cajal, Madrid; Luis Fernández Salazar, Hospital Clínico de Valladolid, Valladolid; Manuel Barreiro, Hospital Clínico de Santiago, Santiago de Compostela; Fernando Gomollón, Hospital Clínico Lozano Blesa, Zaragoza; Juan Antonio Arévalo Serna, Hospital Galdakao-Usansolo, Bilbao; Mónica Peñate, Hospital Insular de Gran Canaria, Las Palmas de Gran Canaria; Ruth María De Francisco García, Hospital Universitario Central de Asturias, Oviedo; Nuria Freixenet, Centro de Atención Primaria, Barcelona; and Maite Tierno, Centro de Atención Primaria, Barcelona.

This study was performed with the technical and methodological support of Dr. Pablo Lázaro y de Mercado and Dr. Antonio Javier Blasco from ‘Técnicas Avanzadas de Investigación en Servicios de Salud’ (TAISS). This study was funded by an unrestricted grant from Shire Pharmaceuticals Ibérica S.L. The authors also thank Marta Pulido, MD, for editing the manuscript and editorial assistance.

Appendix A. Supplementary data

The following are the supplementary data to this article:

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Supplementary Table S1

Classification of 20 patients according to use and knowledge of specific treatments.

 

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Footnotes

a Crohn-Colitis Care Unit, Hospital Universitari Vall d’Hebron, Universitat Autònoma de Barcelona, Barcelona, Spain

b Gastroenterology Department, Hospital Universitario Son Espases, Palma de Mallorca, Spain

c Gastroenterology Department, Hospital Universitario Central de Asturias, Oviedo, Spain

Corresponding author at: Crohn-Colitis Care Unit, Hospital Universitari Vall d’Hebron, Passeig Vall d’Hebron 119, E-08035 Barcelona, Spain. Fax: +34 93 4894456.