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Journal ArticleDOI

Patients' information-seeking activity is associated with treatment compliance in inflammatory bowel disease patients.

TL;DR: In Switzerland, IBD patients noncompliant to treatment were more often seeking disease-related information than compliant patients, and daily management of symptoms and disease seemed to be an important concern of those patients.
Abstract: Background. Despite the chronic and relapsing nature of inflammatory bowel diseases (IBD), at least 30% to 45% of the patients are noncompliant to treatment. IBD patients often seek information about their disease. Aim. To examine the association between information-seeking activity and treatment compliance among IBD patients. To compare information sources and concerns between compliant and noncompliant patients. Methods. We used data from the Swiss IBD cohort study, and from a qualitative survey conducted to assess information sources and concerns. Crude and adjusted odds ratios (OR) for noncompliance were calculated. Differences in the proportions of information sources and concerns were compared between compliant and noncompliant patients. Results. A total of 512 patients were included. About 18% (n = 99) of patients were reported to be noncompliant to drug treatment and two-thirds (n = 353) were information seekers. The OR for noncompliance among information seekers was 2.44 (95%CI: 1.34–4.4...

Summary (3 min read)

INTRODUCTION

  • Inflammatory bowel diseases (IBD), comprising Crohn’s disease (CD) and ulcerative colitis (UC) are mostly diagnosed at young age, implying a lifelong duration of disease with relapsing acute phases followed by periods of remission (1).
  • Most patients require longterm and multiple therapy regimens and about 70% of CD patients require respective bowel surgery.
  • Risk factors for nonadherence were of different types: socio-demographic, psychosocial, disease-related, information- or knowledge-related.
  • The first studies investigating IBD patient’s information needs in the 70’s to 90’s showed concerns focused on aetiology, symptoms, diet, and on therapies and their related risks and benefits (11-15).
  • The authors aimed to investigate the role of patients’ information seeking activities on treatment compliance.

Study design and population

  • This cross-sectional study used data from patients included in the Swiss Inflammatory Bowel Diseases Cohort , a national clinical cohort launched in November 2006.
  • The methods and goals of the study were described elsewhere (20).
  • Briefly, the study enrolled paediatric or adult patients with CD, UC or indeterminate colitis, with a diagnosis having been established for at least four months and confirmed by radiological, endoscopic or surgery assessment.
  • Patients were enrolled by their treating gastroenterologist in private or public ambulatory practices and hospitals.
  • The study population consisted of all adult patients included in the cohort study between November 2006 and August 2009, taking at least one drug at baseline, and who responded to a survey on information seeking.

Data collection and management

  • Clinical data were gathered from gastroenterologists or study nurses through clinical reporting forms during the enrolment medical visit.
  • A self-administered questionnaire was sent to patients by mail following the baseline medical visit.
  • A qualitative survey was developed based on critical incident reporting method (21, 22), and was conducted in October 2009 among patients enrolled up to that time to investigate sources and themes of information searched in four critical stages of the disease.
  • Linkage with SIBDC clinical and patient data was made by using the unique ID number, assigned to all patients included in the cohort.

Outcome and exposures

  • The studied outcome was “non-compliance to treatment”.
  • This measure was studyspecifically developed and collected as an unordered categorical variable with 5 categories for each drug therapy taken by the patient.
  • Information seeking was studied for two main disease stages, i.e., activity or remission.
  • To explore the proportion of each theme explored independently the authors created 6 binary variables, each referring to one of the main themes.
  • Both education and working status classifications derived from these commonly used in the Swiss national health statistics (http://www.bfs.admin.ch/).

Statistical analysis

  • Univariate analyses were performed using logistic regression to examine the strength of the association between compliance to treatment and information seeking, and other exposure variables.
  • Odds ratios (OR) and 95% confidence intervals (CI) were calculated.
  • To investigate for potential confounding of the association between compliance and information seeking, factors significantly associated with the outcome (LRT < 0.1) were tested for association with the main exposure.
  • Other strong risks factors identified in previous studies were also controlled for in the final adjusted model.
  • Results presented in the tables were converted in percentages.

RESULTS

  • By October 2009, 1530 adult patients were included in the cohort when the authors started the survey.
  • From the remaining patients, 204 (16.1%) did not take any IBD medication and measures of compliance were missing for 122 (11.5%) patients who took medication.
  • Out of the 942 drug treated patients, with drug and adherence data, 537 (57%) responded to the survey on information seeking.
  • The number of patients finally analysed in the present study was 512.

Description of the study population

  • Half of the patients were males; the mean age was 41 years, and median disease duration 7 years (table 2).
  • Eighteen percent (N=99) reported to be non-compliant to treatment, and nearly two thirds (N=353) of the patients were seeking information on their disease.
  • Leftsided disease was the most frequent location in UC.
  • One third of IBD patients (N=154) had experienced at least one resection surgery and two-thirds (N=322) >=1 diseaserelated complication.

Correlates of treatment non-compliance

  • The crude odds of being non-adherent (table 4) was significantly higher among information seekers (69%, p=0.045), and decreased significantly by 3% with each year’s increase of age (p<0.001).
  • Factors significantly associated with non-compliance were considered as potential confounders, after checking association between those factors and information seeking.
  • A first model was fitted which included the two confounding factors (nutritional supplements use and drug regimen), and known risk factors for compliance (age, history of surgery and complications, marital status).
  • There was no evidence of a difference among groups for information concerns on research and development on IBD, therapies, basic information on the disease, patients experience sharing or miscellaneous information for non-adherent compared to compliant patients.

DISCUSSION

  • Nearly one out of five patients was non-compliant to drug treatment and 69% of patients were actively seeking information on their disease.
  • This may indicate that non-compliant patients have different needs in terms of information on their disease compared to compliant patients.
  • In other chronic diseases such as cancer, studies have shown that patients searching for health-related information were more compliant (25-27).
  • The authors results indicate that there might be a need for improving communication between doctors and patients, and so between gastroenterologists and patients, at least in Switzerland.
  • Therefore, one might argue that this may affect generalisability of the findings.

Main themes Sub-themes

  • Research and development on the disease Research and development on new drugs and therapies Therapies Comparison between treatments Adverse events of drug treatments Information on biological treatments Information on steroids Consequences of stopping / changing drug treatments Information on drug medication or other therapies Information on surgeries Alternative treatments Supplementation medicines.
  • Gynaecological aspects Pregnancy and babies Employment rights and professional activity Quality of life How to accept the disease status Patients experience sharing Exchanges / experiences sharing Positive experiences with the disease Patients support groups TV reports, patients stories, testimonies Basic information on the disease.
  • All about the disease Information on chronic diseases Information on complications Information on vaccines Information on the disease Information on gastroenterology Cancer Miscellaneous Popular information Updated information Information for Swiss people Information for younger/older.

HADS Depression

  • Test for departure from linear trend comparing model with age as continuous variable with quartile categories of age showed LRT P-value = 0.868.
  • Therefore, age was considered as a continuous variable.

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ZurichOpenRepositoryand
Archive
UniversityofZurich
UniversityLibrary
Strickhofstrasse39
CH-8057Zurich
www.zora.uzh.ch
Year:2014
Patients’information-seekingactivityisassociatedwithtreatment
complianceininammatoryboweldiseasepatients
Pittet,Valérie;Rogler,Gerhard;Mottet,Christian;Froehlich,Florian;Michetti,Pierre;de
Saussure,Philippe;Burnand,Bernard;Vader,John-Paul;SwissIBDCohortStudyGroup
Abstract:BACKGROUND:Despitethechronicandrelapsingnatureofinammatoryboweldiseases
(IBD),atleast30%to45%ofthepatientsarenoncomplianttotreatment.IBDpatientsoftenseek
informationabouttheirdisease. AIM:Toexaminetheassociationbetweeninformation-seekingactivity
andtreatmentcomplianceamongIBDpatients. Tocompareinformationsourcesandconcernsbetween
compliantandnoncompliantpatients.METHODS:WeuseddatafromtheSwissIBDcohortstudy,
andfromaqualitativesurveyconductedtoassessinformationsourcesandconcerns.Crudeandad-
justedoddsratios(OR)fornoncompliancewerecalculated.Dierencesintheproportionsofinformation
sourcesandconcernswerecomparedbetweencompliantandnoncompliantpatients.RESULTS:Atotal
of512patientswereincluded.About18%(n=99)ofpatientswerereportedtobenoncompliantto
drugtreatmentandtwo-thirds(n=353)wereinformationseekers.TheORfornoncomplianceamong
informationseekerswas2.44(95%CI:1.34-4.41)afteradjustmentforconfoundersandmajorriskfactors.
Generalpractitionerswere15.2%moreoftenconsulted(p=0.019)amongcompliantpatients,aswere
booksandtelevision(+13.1%;p=0.048),whereasnodierenceinproportionswasobservedforsources
suchasinternetorgastroenterologists.Informationontipsfordiseasemanagementwere14.2%more
oftensoughtamongnoncompliantpatients(p =0.028).Nodierencewasobservedforconcernson
researchanddevelopmentonIBDortherapies.CONCLUSION:InSwitzerland,IBDpatientsnoncom-
plianttotreatmentweremoreoftenseekingdisease-relatedinformationthancompliantpatients. Daily
managementofsymptomsanddiseaseseemedtobeanimportantconcernofthosepatients.
DOI:https://doi.org/10.3109/00365521.2014.896408
PostedattheZurichOpenRepositoryandArchive,UniversityofZurich
ZORAURL:https://doi.org/10.5167/uzh-105066
JournalArticle
AcceptedVersion
Originallypublishedat:
Pittet,Valérie; Rogler,Gerhard; Mottet,Christian; Froehlich,Florian; Michetti,Pierre; deSaussure,
Philippe;Burnand,Bernard;Vader,John-Paul;Swiss IBD CohortStudyGroup(2014).Patients’
information-seekingactivityisassociatedwithtreatmentcomplianceininammatoryboweldiseasepa-
tients.ScandinavianJournalofGastroenterology,49(6):662-673.
DOI:https://doi.org/10.3109/00365521.2014.896408

1
Patients' information-seeking activity is associated with
treatment compliance in inflammatory bowel disease patients
Valérie Pittet
1$
, Gerhard Rogler
2
, Christian Mottet
3
, Florian Froehlich
4,5
, Pierre
Michetti
6
, Philippe de Saussure
7
, Bernard Burnand
1
, John-Paul Vader
1
, and the Swiss
IBD Cohort Study Group*
1
Institute of Social & Preventive Medicine (IUMSP), Lausanne University Hospital,
Lausanne (Switzerland)
2
Division of Gastroenterology & Hepatology, Zürich University Hospital, Zürich
(Switzerland)
3
Service of Gastroenterology, Hôpital Neuchâtelois, Neuchâtel, (Switzerland)
4
Division of Gastroenterology & Hepatology, Lausanne University Hospital, Lausanne
(Switzerland)
5
Division of Gastroenterology & Hepatology, Basle University Hospital, Basle
(Switzerland)
6
Crohn and Colitis Center, Clinique La Source, Lausanne (Switzerland)
7
Division of Gastroenterology & Hepatology, Geneva University Hospital, Geneva
(Switzerland)
*See appendix.
Short title: Non-compliance-to-treatment and information concerns
§
Corresponding author:

2
Valérie Pittet, PhD
Healthcare Evaluation Unit
Institute of Social & Preventive Medicine (IUMSP)
Route de la Corniche 10
CH-1010 Lausanne
Switzerland
Telephone: +41 21 314 72 82
Fax: +41 21 314 49 54
Email:
Valerie.Pittet@chuv.ch
Word count
Abstract: 242
Main text: 3741

3
ABSTRACT
Background: Despite the chronic and relapsing nature of inflammatory bowel diseases
(IBD), at least 30 to 45% of the patients are non-compliant to treatment. IBD patients
often seek information about their disease.
Aim: To examine the association between information seeking activity and treatment
compliance among IBD patients. To compare information sources and concerns
between compliant and non- compliant patients
Methods: We used data from the Swiss IBD cohort study, and from a qualitative survey
conducted to assess information sources and concerns. Crude and adjusted odds ratios
(OR) for non-compliance were calculated. Differences in the proportions of information
sources and concerns were compared between compliant and non-compliant patients.
Results: 512 patients were included. Eighteen percent (N=99) reported to be non-
compliant to drug treatment and two thirds (N=353) were information seekers. The OR
for non-compliance among information seekers was 2.39 (95%CI 1.32-4.34) after
adjustment for confounders and major risk factors. General practitioners were 15.2%
more often consulted (p=0.019) among compliant patients, as were books and TV
(+13.1%; p=0.048) while no difference in proportions was observed for sources such as
internet or gastroenterologists. Information on tips for disease management were 14.2%
more often sought among non-compliant patients (p=0.028). No difference was
observed for concerns on research and development on IBD or therapies.
Conclusion: In Switzerland, IBD patients non-compliant to treatment were more often
seeking disease-related information than compliant patients. Daily management of
symptoms and disease seemed to be an important concern of those patients.

4
KEYWORDS
Crohn’s disease, ulcerative colitis, information seeking, information concerns,
compliance to treatment

Citations
More filters
Journal ArticleDOI
03 Mar 2016-PLOS ONE
TL;DR: Information remains insufficient for IBD patients, and better information should be considered as a potentially important component in improving patients’ outcomes in IBD.
Abstract: Background Inflammatory Bowel Disease (IBD) patients are confronted with needs and concerns related to their disease.

35 citations

Journal ArticleDOI
TL;DR: Chronic patients were surveyed to longitudinally explore their online information seeking behavior throughout treatment and how this affects their medication beliefs (concerns and necessity) and medication adherence after three weeks and six months.
Abstract: Research on the longitudinal impact of using the internet as an information source on patients' beliefs and medication adherence is scarce Chronic patients (N = 107) from six hospitals were surveyed to longitudinally explore their online information seeking behavior throughout treatment (ie, before the consultation about their newly prescribed medication in the initiation phase and after six months in the implementation phase) and how this affects their medication beliefs (concerns and necessity) and medication adherence after three weeks (T1) and six months (T2) Most patients (79%) used the internet Patients who used the internet before the consultation reported to have more concerns about their medication at T1 and T2 compared to those who did not Moreover, patients who used the internet throughout treatment valued their concerns higher than the necessity after six months (T2) Patients who used the internet after the consultation reported to be more non-adherent after three weeks (T1) compared to those who did not Because of the longitudinal nature of this study, we were able to pinpoint in which treatment phase patients' online information seeking behavior is particular relevant in affecting patients' beliefs and medication adherence

35 citations


Cites background from "Patients' information-seeking activ..."

  • ...The internet has become increasingly important to individuals in their everyday lives (Marton & Wei Choo, 2012) and it is more a rule than an exception that patients Google throughout treatment (Pittet et al., 2014)....

    [...]

Journal ArticleDOI
TL;DR: Patients are satisfied with quality of care in IBD and communication seems to be an important area of improvement – not only related to patient–physician communication, but also to transitional communication between different health-care levels.
Abstract: Background and aims Quality of care (QoC) has gained increased attention in IBD. A better QoC has, historically, been linked to improved treatment outcomes. Even so, factors of equal importance to patients may be quality of life (QoL), patient–physician communication and access to care. Recent surveys suggest that IBD care in Europe is suboptimal. Methods Patients were recruited from nine hospitals in the south-eastern and western part of Norway as a part of an observational, multicenter study In addition to clinical and socio-demographic factors; a purposely designed 26 item questionnaire was used to quantify aspects related to IBD care, including QoC. Moreover, the Fatigue Questionnaire (FQ) was used to investigate fatigue. Results In total, 411 patients were included. Of these, 231 were diagnosed with CD and 180 with UC. Furthermore, 86.1% (354/411) were satisfied with the quality of IBD follow-up and only 4.1% (17/411) were dissatisfied. Most dissatisfaction was related to: lack of focus on pe...

19 citations

Journal ArticleDOI
TL;DR: Rheumatoid arthritis patients received the most medication information from professional sources, and both positive and negative characteristics were associated with receiving more medication information.
Abstract: Little is known about factors associated with the receipt of medication information among arthritis patients. This study explores information source receipt and associations between demographic and clinical/patient characteristics and the amount of arthritis medication information patients receive. Adult patients with osteoarthritis (OA) or rheumatoid arthritis (RA; n = 328) completed an online cross-sectional survey. Patients reported demographic and clinical/patient characteristics and the amount of arthritis medication information received from 15 information sources. Bivariate and multivariate linear regression analyses were used to investigate whether those characteristics were associated with the amount of medication information patients received. Arthritis patients received the most information from health professionals, followed by printed materials, media sources, and interpersonal sources. Greater receipt of information was associated with greater medication adherence, taking more medications, g...

13 citations


Cites background or result from "Patients' information-seeking activ..."

  • ...4 times more likely to be active information seekers compared to adherent patients (Pittet et al., 2014)....

    [...]

  • ...This finding is not supported by another study that found that nonadherent patients (with inflammatory bowel disease) were 2.4 times more likely to be active information seekers compared to adherent patients (Pittet et al., 2014)....

    [...]

Journal ArticleDOI
TL;DR: Depressed CD patients in clinical remission may have dysfunctional coping strategies, meaning that they may not be able to implement functional strategies to manage at best stress related with their disease.
Abstract: Background and Aims. This study investigated the proportion of CD patients in clinical remission with clinical depression, and coping strategies in those with severe depressive disorders. Materials and Methods. One hundred consecutive CD patients in clinical remission were screened for anxiety and depression by using Hospital Anxiety and Depression Scale and patients with depressive symptoms were further investigated by means of Cognitive Behavioural Assessment 2.0 and Beck Depression Inventory (BDI). Afterwards the coping strategies were assessed through the Brief-COPE questionnaire. Results. Twenty-one patients had anxious symptoms and 16 had depressive symptoms with or without anxiety. Seven of these patients (43.8%) showed significant depressive symptoms. Compared to patients without psychiatric disorders, these patients showed significant lower score in “positive reframing” (p: 0.017) and in “planning” (p: 0.046) and higher score in “use of instrumental social support” (p < 0.001), in “denial” scale (p: 0.001), and in “use of emotional social support” (p: 0.003). Conclusions. Depressed CD patients in clinical remission may have dysfunctional coping strategies, meaning that they may not be able to implement functional strategies to manage at best stress related with their disease.

9 citations

References
More filters
Journal ArticleDOI
TL;DR: It is suggested that the introduction of the scales into general hospital practice would facilitate the large task of detection and management of emotional disorder in patients under investigation and treatment in medical and surgical departments.
Abstract: A self-assessment scale has been developed and found to be a reliable instrument for detecting states of depression and anxiety in the setting of an hospital medical outpatient clinic. The anxiety and depressive subscales are also valid measures of severity of the emotional disorder. It is suggested that the introduction of the scales into general hospital practice would facilitate the large task of detection and management of emotional disorder in patients under investigation and treatment in medical and surgical departments.

35,518 citations

Journal ArticleDOI

8,493 citations


"Patients' information-seeking activ..." refers methods in this paper

  • ...A qualitative survey was developed based on critical incident reporting method [21,22], and was conducted in October 2009 among patients enrolled up to that time to investigate sources and themes of information searched in four critical stages of the disease....

    [...]

Journal ArticleDOI
TL;DR: The aim of this international Working Party was to develop a simple classification of Crohn's disease based on objective variables, and the allocation of patients to these 24 subgroups proved feasible and resulted in specific disease clusters.
Abstract: Crohn's disease is a heterogeneous entity. Previous attempts of classification have been based primarily on anatomic location and behavior of disease. However, no uniform definition of patient subgroups has yet achieved broad acceptance. The aim of this international Working Party was to develop a simple classification of Crohn's disease based on objective variables. Eight outcome-related variables relevant to Crohn's disease were identified and stepwise evaluated in 413 consecutive cases, a database survey, and by clinical considerations. Allocation of variables was conducted with well-defined Crohn's disease populations from Europe and North America. Cross-table analyses were performed by chi-square testing. Three variables were finally elected: Age at Diagnosis [below 40 years (A1), equal to or above 40 years (A2)], Location [terminal ileum (L1), colon (L2), ileocolon (L3), upper gastrointestinal (L4)], and Behavior [nonstricturing nonpenetrating (B1), stricturing (B2), penetrating (B3)]. The allocation of patients to these 24 subgroups proved feasible and resulted in specific disease clusters. Cross-table analyses revealed associations between Age at Diagnosis and Location, and between Behavior and Location (all p < 0.001). The Vienna classification of Crohn's disease provides distinct definitions to categorize Crohn's patients into 24 subgroups. Operational guidelines should be used for the characterization of patients in clinical trials as well as for correlation of particular phenotypes with putative biologic markers or environmental factors.

1,152 citations


"Patients' information-seeking activ..." refers methods in this paper

  • ...Disease characteristics were grouped according to the Vienna classification [24]....

    [...]

Journal ArticleDOI
TL;DR: EIMs are a frequent problem in CD and UC patients and identification of EIM prevalence and associated risk factors may result in increased awareness for this problem and thereby facilitating their diagnosis and therapeutic management.

420 citations


"Patients' information-seeking activ..." refers background in this paper

  • ...Inflammatory bowel diseases (IBD), comprising Crohn’s disease (CD) and ulcerative colitis (UC) are mostly diagnosed at young age, implying a lifelong durationof diseasewith relapsing acutephases followed by periods of remission [1]....

    [...]

Journal ArticleDOI
28 Jul 2004-JAMA
TL;DR: The decision board was helpful in improving communication and enabling women to make a choice regarding treatment, and should be considered by surgeons when communicating the different surgical options to women with breast cancer.
Abstract: ContextThe long-term results of randomized trials have demonstrated equivalent survival rates for mastectomy and breast-conserving therapy for the treatment of early stage breast cancer. Consequently, the choice of treatment should be based on a patient's preferences.ObjectiveTo evaluate the impact of a decision aid regarding the different surgical treatment options on patient decision making.Design and SettingA cluster randomized trial for which general surgeons in the communities of central-west, and eastern Ontario, Canada, were randomly assigned to use the decision aid or not in the surgical consultation. Patients received the decision aid or not based on the surgeon seen.ParticipantsTwenty surgeons participated in the study. Of the 208 eligible women with newly diagnosed clinical stage I or II breast cancer seen by study surgeons, 201 agreed to be evaluated: 94 were assigned to the decision board and 107 to usual practice. Patients were recruited from November 1999 to April 2002.InterventionThe decision board is a decision aid designed to help physicians inform their patients about different treatment options and to enable patients to express a preference for treatment.Main Outcome MeasuresPatient knowledge about the surgical treatment of breast cancer; decisional conflict; satisfaction with decision making; and the treatment decision following the consultation.ResultsPatients in the decision board group had higher knowledge scores about their treatment options (66.9 vs 58.7; P<.001), had less decisional conflict (1.40 vs 1.62, P = .02), and were more satisfied with decision making (4.50 vs 4.32, P = .05) following the consultation. Patients who used the decision board were more likely to choose BCT (94% vs 76%, P = .03).ConclusionsThe decision board was helpful in improving communication and enabling women to make a choice regarding treatment. Such instruments should be considered by surgeons when communicating the different surgical options to women with breast cancer.

401 citations


"Patients' information-seeking activ..." refers background in this paper

  • ...In other chronic diseases such as cancer, studies have shown that patients searching for health-related information were more compliant (25-27)....

    [...]

Related Papers (5)
Frequently Asked Questions (1)
Q1. What are the contributions in "Patients' information-seeking activity is associated with treatment compliance in inflammatory bowel disease patients" ?

METHODS: the authors used data from the Swiss IBD cohort study, and from a qualitative survey conducted to assess information sources and concerns.