Do inflammatory bowel disease patient preferences from treatment outcomes differ by ethnicity and gender?A cross-sectional observational study

BACKGROUND Inflammatory bowel disease(IBD)patients’expectations of treatment outcomes may differ by ethnicity.AIM To investigate treatment preferences of Jewish and Arabs patients.METHODS This prospective survey ranked outcomes treatment preferences among Arab IBD patients,based on the 10 IBD-disk items compared to historical data of Jews.An anonymous questionnaire in either Arabic or Hebrew was distributed among IBD patients.Patients were required to rank 10 statements describing different aspects of IBD according to their importance to the patients as treatment goals.Answers were compared to the answers of a historical group of Jewish patients.RESULTS IBD-disk items of 121 Arabs were compared to 240 Jewish patients.The Jewish patients included more females,[151(62.9%)vs 52(43.3%);P<0.001],higher education level(P=0.02),more urban residence[188(78.3%)vs 54(45.4%);P<0.001],less unemployment[52(21.7%)vs 41(33.9%);P=0.012],higher income level(P<0.001),and more in a partnership[162(67.8%)vs 55(45.4%);P<0.001].Expectations regarding disease symptoms:abdominal pain,energy,and regular defecation ranked highest for both groups.Arabs gave significantly lower rankings(range 4.29-6.69)than Jewish patients(range 6.25-9.03)regarding all items,except for body image.Compared to Arab women,Jewish women attached higher priority to abdominal pain,energy,education/work,sleep,and joint pain.Multivariable regression analysis revealed that higher patient preferences were associated with Jewish ethnicity(OR 4.77;95%CI 2.36-9.61,P<0.001)and disease activity.The more active the disease,the greater the odds ratio for higher ranking of the questionnaire items(1-2 attacks per year:OR 2.13;95%CI 1.02-4.45,P=0.043;and primarily active disease:OR 5.29;95%CI 2.30-12.18,P<0.001).Factors inversely associated with higher patient preference were male gender(OR 0.5;95%CI 0.271-0.935,P=0.030),UC(OR 0.444;95%CI 0.241-0.819,P=0.009),and above average income level(OR 0.267;95%CI:0.124-0.577,P=0.001).CONCLUSION The highest priority for treatment outcomes was symptom relief.,Patients preferences were impacted by ethnicity,gender,and socio-economic disparity.Understanding patients'priorities may improve communication and enable a personalized approach.

Internet-based nationwide evaluation of patient preferences for mobile health features in ankylosing spondylitis

Background Ankylosing spondylitis(AS)generally occurs in young adults.The functional impairments resulting in limitation in activities and social participation might exert lifetime impacts.The present study investigated the preferences for mobile health(mHealth)features motivating the self-management behaviors in AS.Methods The present study was an internet-based,nationwide quantitative study based on the Chinese Ankylos-ing Spondylitis Prospective Imaging Cohort(CASPIC)study,which was a nationwide,ongoing,prospective cohort study launched in conjunction with Smart-phone SpondyloArthritis Management System(SpAMS)in China.Par-ticipants with AS from the CASPIC were invited to report their mHealth preferences from December 2019 to February 2020.The questionnaire was designed to determine the patient preferences for 28 mHealth features.Sociodemographic characteristics,including age,gender,and work status,were collected.Results Among all the visitors to the online questionnaire(n=872),93.9%(819/872)respondents fully com-pleted the questionnaire and were enrolled in the present study.The mean age was(33.4±9.0)years,and 70.57%(578/819)of the respondents were males.The mean scores of 22(78.57%)features were greater than 4(like or strongly like).The mean standard deviation(SD)score of exercise instructions was 4.70(0.63),which was the most preferred feature,whereas the social interaction features were preferred the least.Pain analysis was more preferred among female respondents(4.72 vs.4.60,P=0.012),whereas all items of the social interaction theme and social interaction as a whole(3.73 vs.3.52,P<0.001)were less preferred among female respondents.Additionally,the following themes were more preferred by respondents aged≤40 years:credibility and styling(4.37 vs.4.19,P<0.001);disease action support(4.55 vs.4.47,P=0.007);and incentivization(4.35 vs.4.24,P=0.025).Conclusion AS patients show great interest for the majority of mHealth features.Exercise instructions and exercise scheduling are the most preferred features,whereas social interaction is the least preferred feature.In addition,gender-related and age-related differences exist in mHealth feature preferences.

Preferences for participation in shared decision making of psychiatric outpatients with affective disorders

Objective: To assess preferences for participation in shared decision making in a representative sample of psychiatric outpatients with affective disorders and to understand how clinical and socio-demographic variables influence patients’ preferences for participation. Method: A cross-sectional survey of 172 consecutive psychiatric outpatients with affective disorders attending at Community Mental Health Care setting was carried out. Patients expressed preferences on each of 3 aspects of decision making (seeking information, discussing options, making the final decision). The “CGI Severity and Improvement Scales” and the “Beck Depression Inventory” scale were used for severity assessment. Additionally the “Drug Attitude Inventory”, the “Beliefs about Medicine Questionnaire” and the “Leeds Attitude toward Concordance Scale” were applied to all participants. Effects of variables considered on preferences were assessed using proportional odds regression models. Results: We registered a high response rate of 85%. Nearly all patients (91%) preferred to leave final decisions to their treating psychiatrists and 87% preferred to rely on psychiatrists for medical knowledge rather than seeking their own information. In contrast, 81% of patients preferred to be offered options and to be asked their opinion by their doctors. Gender, age, educational level, number of psychotropics used and belief about psychiatric medication overuse were significant predictors in decision making dimensions considered. Conclusion: Shared decision making approach of patients with affective disorder must take into consideration a more doctor-directed approach preferred by the patients in which the desire to be offered options is not automatically linked with the willingness of taking decisions or getting more knowledge.

Future Long-Term Care Setting Preferences and Related Factors among Japanese Middle-Aged and Older People Living with HIV

Since the introduction of antiretroviral therapy, the life expectancy of people living with human immunodeficiency virus (PLWH) has extended. This extension has led to an increase in the aging population in Japan and globally. Providing appropriate long-term care (LTC) for PLWH has thus become increasingly critical. Our study aimed to describe LTC setting preferences and related factors among middle-aged and older Japanese people living with HIV. A cross-sectional survey was conducted at two hospitals in Tokyo. One hundred seventy-five outpatients aged 40 years and above participated in this study. Participants completed an anonymous self-administered questionnaire to assess where they wanted to live once they could no longer care for themselves. Approximately 52.0% preferred a designated facility for older adults or LTC, while 30.3% preferred their home or living with family, a partner, or a friend (“familiar housing”). Bivariate analyses revealed that LTC setting preference was significantly associated with marital status, whether or not the participant had at least one child, and household composition. Furthermore, logistic regression analysis revealed that participants living with non-kin were less likely to prefer living in designated housing facilities for older adults or LTC (adjusted odds ratio = 0.17, 95% confidence interval: 0.05 - 0.63). The study findings suggest that family make-up and composition of cohabiters are critical indicators for LTC setting preference in this population. These findings can be the foundation for future care planning and delivery to meet the unique LTC needs and expectations of the aging population with HIV in Japan and similar global settings.

Neoadjuvant therapy for resectable pancreatic ductal adenocarcinoma: The need for patient-centered research

Pancreatic ductal adenocarcinoma is an aggressive cancer with high recurrence rates following surgical resection.While adjuvant chemotherapy improves survival,a significant proportion of patients are unable to initiate or complete all intended therapy following pancreatectomy due to postoperative complications or poor performance status.The administration of chemotherapy prior to surgical resection is an alternative strategy that ensures its early and near universal delivery as well as improves margin-negative resection rates and potentially improves long-term survival outcomes.Neoadjuvant therapy is increasingly being recommended to patients with pancreatic ductal adenocarcinoma,however,patient-centered research on its use is lacking.In this review,we highlight opportunities to focus research efforts in the domains of patient preferences,patient-reported outcomes,patient experience,and survivorship.Novel research in these areas may identify relevant barriers and facilitators to the use of neoadjuvant therapy thereby increasing its utilization,improve shareddecision making for patients and providers,and optimize the experience of those undergoing neoadjuvant therapy.

Development and evaluation of the Directive and Nondirective Support Scale for Patients with Type 2 Diabetes

Objectives:This study aims to develop the Directive and Nondirective Support Scale for Patients with Type 2 Diabetes(DNSS-T2DM)to measure diabetes-specific support and patients’preference as well as evaluate the construct validity and reliability of the DNSS-T2DM.Methods:A cross-sectional study was conducted in Tongzhou District,Beijing,China from July to September 2015.A total of 474 participants who had been diagnosed as type 2 diabetes by physicians and completed the DNSS-T2DM were included.The original 11-item DNSS-T2DM contains five items on nondirective support(Items 1-5)and six items on directive support(Items 6-11).There were two parallel questions for each item with one to measure the preference for support(Preference part)and the other to measure the perception of support in reality(Reality part).The final DNSS-T2DM was determined based on the results of the exploratory factor analysis(EFA).The construct validity of the final DNSS-T2DM was evaluated by the confirmatory factor analysis(CFA).The reliability was evaluated by internal consistency with Cronbach’sαcoefficients.Results:A final 7-item DNSS-T2DM loaded on 2 factors with four items representing nondirective support and three items representing directive support was determined based on the EFA.The CFA indicated a satisfactory construct validity.The internal consistency of the 7-item DNSS-T2DM as well as the nondirective support items was satisfactory with Cronbach’sα≥7.00.70.Conclusions:Our study supported the validity and reliability of the 7-item DNSS-T2DM.Further studies on the application of the DNSS-T2DM in different settings and population are needed.

What Is the Personal Experience of IBD Patients about Their Anti-TNF-Alpha Therapy?

AIM: To evaluate and compare the patients opinion on the two types of anti- TNF-α therapies in a Hungarian cohort of IBD patients. METHODS: This was a prospective, multicentre, questionnaire-based observational study carried out in three Hungarian tertiary centres. From April to September 2014, an anonymous questionnaire was distributed to patients diagnosed with ulcerative colitis (UC) or Crohn’s disease (CD), who have received infliximab (IFX) and/or adalimumab (ADA). The survey focused on the preferences of the two anti-TNF-α therapies on the basis of the efficacy, the administration routes and the side effects. RESULTS: 292 IBD patients, 216 CD, 75 UC and 1 indeterminate colitis patient completed the questionnaire. The mean duration of biological therapy was 1.7 (1 - 7) years. IFX treated patients noticed improvement of symptoms at 4 - 5 weeks while ADA treated patients noticed at 5 - 6 weeks. There was no difference between the patients’ satisfaction regarding the types of anti-TNF-α therapy if they received both. However, subcutaneous administration was preferred by ADA-treated patients previously receiving IFX (p = 0.007) compared to intravenous route and they did not intend to change the mode of therapy (p = 0.040). 90% of the patients, receiving only IFX or ADA were satisfied with their present therapy. The majority of patients (186/292, 63.7%) would not switch therapy. 63 of 291, 22% of the patients reported to have some concern with biological therapy—the majority (32/63, 50.8%) due to fear from side effects. CONCLUSION: Generally, patients preferred and would not change the present anti-TNF-α therapy, however, subcutaneous administration was preferred among those patients who had have experience with both.

Sphincter preservation for distal rectal cancer - a goal worth achieving at all costs?

To assess the merits of currently available treatment options in the management of patients with low rectal cancer, a review of the medical literature pertaining to the operative and non-operative management of low rectal cancer was performed, with particular emphasis on sphincter preservation, oncological outcome, functional outcome, morbidity, quality of life, and patient preference. Low anterior resection (AR) is technically feasible in an increasing proportion of patients with low rectal cancer. The cost of sphincter preservation is the risk of morbidity and poor functional outcome in a significant proportion of patients. Transanal and endoscopic surgery are attractive options in selected patients that can provide satisfactory oncological outcomes while avoiding the morbidity and functional sequelae of open total mesorectal excision. In complete responders to neo-adjuvant chemoradiotherapy, a non-operative approach may prove to be an option. Abdominoperineal excision (APE) imposes a permanent stoma and is associated with significant incidence of perineal morbidity but avoids the risk of poor functional outcome following AR. Quality of life following AR and APE is comparable. Given the choice, most patients will choose AR over APE, however patients following APE positively appraise this option. In striving toward sphincter preservation the challenge is not only to achieve the best possible oncological outcome, but also to ensure that patients with low rectal cancer have realistic and accurate expectations of their treatment choice so that the best possible overall outcome can be obtained by each individual.

Uptake and outcomes of small intestinal and urinary tract cancer surveillance in Lynch syndrome

BACKGROUND Lynch syndrome(LS)is a hereditary cancer predisposition syndrome associated with increased risk of multiple cancers.While colorectal cancer surveillance decreases mortality in LS and is recommended by guidelines,there is lack of evidence for the efficacy of surveillance for extra-colonic cancers associated with LS,including small intestinal cancer(SIC)and urinary tract cancer(UTC).Given the limited evidence,guidelines do not consistently recommend surveillance for SIC and UTC,and it remains unclear how often individuals will choose to undergo and follow through with extra-colonic surveillance recommendations.AIM To study factors associated with SIC and UTC surveillance uptake and outcomes in LS.METHODS This is an IRB-approved retrospective analysis of individuals with LS seen at a tertiary care referral center.Included individuals had a pathogenic or likely pathogenic variant in MLH1,MSH2,MSH6,PMS2,or EPCAM,or were a confirmed obligate carrier,and had at least one documented visit to our center.Information regarding SIC and UTC surveillance was captured for each individual,and detailed personal and family history was obtained for individuals who had an initial LS management visit in our center’s dedicated high-risk LS clinic between January 1,2017 and October 29,2020.During these initial management visits,all patients had in-depth discussions of SIC and UTC surveillance with 1 of 3 providers experienced in LS management to promote informed decision-making about whether to pursue SIC and/or UTC surveillance.Statistical analysis using Pearson’s chi-squared test and Wilcoxon rank-sum test was completed to understand the factors associated with pursuit and completion of SIC and UTC surveillance,and a P value below 0.05 was deemed statistically significant.RESULTS Of 317 individuals with LS,86(27%)underwent a total of 105 SIC surveillance examinations,with 5 leading to additional work-up and no SICs diagnosed.Additionally,99(31%)patients underwent a total of 303 UTC surveillance examinations,with 19 requiring further evaluation and 1 UTC identified.Of 155 individuals who had an initial LS management visit between January 1,2017 and October 29,2020,63(41%)chose to undergo SIC surveillance and 58(37%)chose to undergo UTC surveillance.However,only 26(41%)and 32(55%)of those who initially chose to undergo SIC or UTC surveillance,respectively,successfully completed their surveillance examinations.Individuals with a pathogenic variant in MSH2 or EPCAM were more likely to initially choose to undergo SIC surveillance(P=0.034),and older individuals were more likely to complete SIC surveillance(P=0.007).Choosing to pursue UTC surveillance was more frequent among older individuals(P=0.018),and females more frequently completed UTC surveillance(P=0.002).Personal history of cancer and family history of SIC or UTC were not significantly associated with electing nor completing surveillance.Lastly,the provider discussing SIC/UTC surveillance was significantly associated with subsequent surveillance choices.CONCLUSION Pursuing and completing SIC/UTC surveillance in LS is influenced by several factors,however broad incorporation in LS management is likely unhelpful due to low yield and frequent false positive results.

The effects of medical insurance and patients’ preference on manufacturer encroachment in a pharmaceutical supply chain

With the development of e-commerce,manufacturers have opportunities to sell products to consumers through direct channels in addition to independent retailers.Although manufacturers’encroachment upon the retailing market of traditional goods has been extensively studied,there is a lack of research on manufacturers’encroachment in a pharmaceutical supply chain.This paper analyzes a pharmaceutical manufacturer encroachment strategy by taking into account the distinctive features of drugs,in which drug expenses are covered by medical insurance only in the physical channel and patients'channel preference is also considered.We find that under certain circumstances,the manufacturer encroachment may lead to a win-win outcome for both the manufacturer and the retailer,contradicting the conventional wisdom that the manufacturer's encroachment into retail space is detrimental to the independent retailer.Additionally,the manufacturer is more likely to encroach when the incurred extra cost is sufficiently small,the perceived quality of the drug selling through the direct channel is sufficiently high and the out-of-pocket percentage cost of the drug selling in the physical channel is high.We further study the impact of manufacturer encroachment on social welfare and find that the introduction of encroachment decreases the social welfare when patients'perceived quality of the drug obtained through the online store is low and improves the social welfare when the perceived quality exceeds a certain threshold.

An open-label, multicenter, randomized, crossover study comparing sildenafil citrate and tadalahl for treating erectile dysfunction in Chinese men na＇=＇ve to phosphodiesterase 5 .inhibitor therapy

The study was to compare treatment preference, efficacy, and tolerability of sildenafil citrate （sildenafil） and tadalafil for treating erectile dysfunction （ED） in Chinese men na＇ive to phosphodiesterase 5 （PDE5） inhibitor therapies. This multicenter, randomized, open-label, crossover study evaluated whether Chinese men with ED preferred 20-mg tadalafil or 100-mg sildenafil. After a 4 weeks baseline assessment, 383 eligible patients were randomized to sequential 20-mg tadalafil per 100-mg sildenafil or vice versa for 8 weeks respectively and then chose which treatment they preferred to take during the 8 weeks extension. Primary efficacy was measured by Question 1 of the PDE5 Inhibitor Treatment Preference Questionnaire （PITPQ）. Secondary efficacy was analyzed by PITPQ Question 2, the International Index of Erectile Function （IIEF） erectile function （EF） domain, sexual encounter profile （SEP） Questions 2 and 3, and the Drug Attributes Questionnaire. Three hundred and fifty men （91%） completed the randomized treatment phase. Two hundred and forty-two per 350 （69.1%） patients preferred 20-mg tadalafil, and 108/350 （30.9%） preferred lO0-mg sildenafil （P 〈 0.001） as their treatment in the 8 weeks extension. Ninety-two per 242 （38%） patients strongly preferred tadalafil and 37/108 （34.3%） strongly the preferred sildenafil. The SEP2 （penetration）, SEP3 （successful intercourse）, and IIEF-EF domain scores were improved in both tadalafil and sildenafil treatment groups. For patients who preferred tadalafil, getting an erection long after taking the medication was the most reported reason for tadalafil preference. The only treatment-emergent adverse event reported by 〉 2% of men was headache. After tadalafil and sildenafil treatments, more Chinese men with ED na＇ive to PDE5 inhibitor preferred tadalafil. Both sildenafil and tadalafil treatments were effective and safe.