Reflect Patient Preferences Research Articles

Case Series: The use of Lithium in Bipolar Affective Disorder and End-Stage Renal Disease

IntroductionLithium is a highly effective treatment in the management of Bipolar Affective Disorder (BPAD) however it is associated with increased risk of developing chronic kidney disease. There is a lack of clear guidance on alternative approaches to managing those individuals that require cessation of lithium due to progression to end stage renal disease (ESRD).ObjectivesWe discuss two patients with BPAD on lithium therapy who have developed ESRD. In both cases, lithium was discontinued due to ESRD, with alternatives trialled. In one case, the patient continues to be managed without lithium, whereas in the second, a decision was made to recommence lithium at a low dose. We reviewed the literature to provide meaningful context to the cases.MethodsCase 1 This patient with a long history of BPAD and multiple medical co-morbidities experienced progressive decline in renal function. A decision was made to cease lithium therapy with close monitoring for signs of affective relapse. The patient was stabilised using a combination of sodium valproate and quetiapine. Since cessation of lithium, the patient has required a significant increase in support from the CMHT and more frequent admissions to manage mood and anxiety symptoms that cause significant subjective distress.Results Case 2 This patient had a long history of stable BPAD, with no episodes of illness for over 30 years. Unfortunately they developed CKD and despite a significant reduction in lithium over time, they developed ESRD requiring haemodialysis. Lithium was discontinued leading to a manic relapse of BPAD requiring a prolonged admission and a combination of carbamezapine, olanzapine, escitalopram and clonazepam to stabilise their mental state. Following discharge home, their mental state failed to reach baseline and they reported significant anxiety symptoms and memory impairment. Following protracted assessment and support they were deemed unfit for renal transplant and a decision was then made by the patient, their family, nephrology and psychiatry to recommence lithium therapy whilst on haemodialysis. Their anxiety and functioning improved significantly following the reintroduction of low dose lithium, allowing the withdrawal of other neuroleptics.ConclusionsBoth cases required an individual approach to balance physical and mental health considerations. There are no clear markers to predict if a patient will respond to alternative mood stabilisers, nor is there a guarantee that kidney function will improve or stop declining when lithium is discontinued. Decisions should reflect patient preference and balance risks associated with relapse and of declining ESRD.Disclosure of InterestNone Declared

Challenges in patient-centered germline testing delivery for veterans with advanced prostate cancer (APC).

71 Background: In a quest to tailor care to tumor biology, oncologists now offer germline testing to all patients with APC. We explored the degree to which germline testing decisions reflect patient preferences about potential benefits and harms discussed by oncologists. Methods: We conducted a prospective qualitative study of consecutive patients with APC who were offered germline testing at an oncology visit at the San Francisco VA. We audio-recorded visits and conducted semi-structured interviews using a theory-informed guide with patients after their visit to understand their decision-making process for germline testing. We analyzed the interviews using the Critical Incident Technique to identify positive or negative deviations from well-informed, preference-based decisions. We also reviewed consent documentation in the electronic health record. Results: Of 61 patients approached, 30 completed interviews after their germline testing discussion. Mean age was 75y; 19 (63%) were White, 9 (30%) Black, and 2 (6%) Other race; and 13 (43%) were service-connected for APC. Twenty-six (87%) patients consented to germline testing; the primary reasons were altruistic (to help family and contribute to knowledge). Four patients (13%) declined testing, all primarily due to the fear of potential loss or reduction of service-connected benefits. All four patients reported they would reconsider testing if assured that these benefits would be protected regardless of test results. Of the four patients, two had initially consented to testing with their oncologist but later changed their minds and did not notify anyone. The two patients received germline testing when they underwent PSA testing, but they were not aware that they had germline testing performed. Both had negative test results, and they therefore did not experience threats to their service-connected benefits. Conclusions: Some Veterans with service-connected benefits for APC decline germline testing due to the fear of potential loss or reduction of these benefits, thereby foregoing potential treatment benefits. An advisory board is working with the Veterans Benefits Administration to protect service-connected benefits for these Veterans. In addition, a few Veterans may agree to germline testing with their oncologist, but then change their minds due to concerns surrounding service-connected benefits. From a quality improvement perspective, the experiences of the patients in this study who changed their minds counts as a near-miss. Although uptake of germline testing was high in this cohort, current workflows may need to be addressed to account for a change of heart, and further research is needed to understand root causes and identify possible remedies of the near-misses. Overall, our findings illustrate the importance of informed consent for germline testing to ensure that results are desired and valued by both oncologist and patient.

Assessing Patients' Preferences for Preventive Dental Care: A Discrete Choice Experiment.

Background It is crucial to recognize patients' behavioral responses to improve oral healthcare delivery. A discrete choice experiment (DCE) is typically used to measure service user preferences. The purpose of this study was to examine the preferences of the Saudi population regarding primary dental care using a DCE. Materials and methods An online DCE survey was distributed among adults aged 18 years and older living in Saudi Arabia. An orthogonal design was used to reduce the number of combinations while maintaining the main effects that reflect patient preferences. Respondents were presented with a reduced set of 10 cards (tasks), and each of the cards had two concepts (offers). Descriptive statistics were used to summarize the sample characteristics. The coefficients were calculated based on discrete choice results on the Qualtrics platform. Results A total of 532 participants completed the survey. Among patients seeking a preventive dental visit, the ability to get an appointment was rated the most important influence on their decision with a relative importance of 41%, followed by the dental care provider (29%) and the dental clinic in relation to the sector and the fees (20%). The least important attribute was the waiting time in minutes, with a relative importance of 10%. Conclusion The study findings revealed that patients make trade-offs when deciding to receive primary dental care. Policymakers can use the study's findings to inform their decisions concerning dental clinic services. The study results suggest that it is possible to improve access to primary dental care by improving the accessibility of appointments.

Use of Bayesian decision analysis to maximize value in patient-centered randomized clinical trials in Parkinson’s disease

ABSTRACT A fixed one-sided significance level of 5% is commonly used to interpret the statistical significance of randomized clinical trial (RCT) outcomes. While it is necessary to reduce the false positive rate, the threshold used could be chosen quantitatively and transparently to specifically reflect patient preferences regarding benefit–risk tradeoffs as well as other considerations. How can patient preferences be explicitly incorporated into RCTs in Parkinson’s disease (PD), and what is the impact on statistical thresholds for device approval? In this analysis, we apply Bayesian decision analysis (BDA) to PD patient preference scores elicited from survey data. BDA allows us to choose a sample size () and significance level () that maximizes the overall expected value to patients of a balanced two-arm fixed-sample RCT, where the expected value is computed under both null and alternative hypotheses. For PD patients who had previously received deep brain stimulation (DBS) treatment, the BDA-optimal significance levels fell between 4.0% and 10.0%, similar to or greater than the traditional value of 5%. Conversely, for patients who had never received DBS, the optimal significance level ranged from 0.2% to 4.4%. In both of these populations, the optimal significance level increased with the severity of the patients’ cognitive and motor function symptoms. By explicitly incorporating patient preferences into clinical trial designs and the regulatory decision-making process, BDA provides a quantitative and transparent approach to combine clinical and statistical significance. For PD patients who have never received DBS treatment, a 5% significance threshold may not be conservative enough to reflect their risk-aversion level. However, this study shows that patients who previously received DBS treatment present a higher tolerance to accept therapeutic risks in exchange for improved efficacy which is reflected in a higher statistical threshold.

Improving oncology first-in-human and Window of opportunity informed consent forms through participant feedback

BackgroundAlthough patient advocates have developed templates for standard consent forms, evaluating patient preferences for first in human (FIH) and window of opportunity (Window) trial consent forms is critical due to their unique risks. FIH trials are the initial use of a novel compound in study participants. In contrast, Window trials give an investigational agent over a fixed duration to treatment naïve patients in the time between diagnosis and standard of care (SOC) surgery. Our goal was to determine the patient-preferred presentation of important information in consent forms for these trials.MethodsThe study consisted of two phases: (1) analyses of oncology FIH and Window consents; (2) interviews of trial participants. FIH consent forms were analyzed for the location(s) of information stating that the study drug has not been tested in humans (FIH information); Window consents were analyzed for the location(s) of information stating the trial may delay SOC surgery (delay information). Participants were asked about their preferred placement of the information in their own trial’s consent form. The location of information in the consent forms was compared to the participants’ suggestions for placement.Results34 [17 FIH; 17 Window] of 42(81%) cancer patients approached participated. 25 consents [20 FIH; 5 Window] were analyzed. 19/20 FIH consent forms included FIH information, and 4/5 Window consent forms included delay information. 19/20(95%) FIH consent forms contained FIH information in the risks section 12/17(71%) patients preferred the same. Fourteen (82%) patients wanted FIH information in the purpose, but only 5(25%) consents mentioned it there. 9/17(53%) Window patients preferred delay information to be located early in the consent, before the “Risks” section. 3/5(60%) consents did this.ConclusionsDesigning consents that reflect patient preferences more accurately is essential for ethical informed consent; however, a one-size fits all approach will not accurately capture patient preferences. We found that preferences differed for FIH and Window trial consents, though for both, patients preferred key risk information early in the consent. Next steps include determining if FIH and Window consent templates improve understanding.

Improving first-in-human and window-of-opportunity informed consent forms through participant feedback.

1562 Background: Although patient advocates have created templates for standard consent forms, assessing patient preferences for First in Human (FIH) and Window of Opportunity (WO) trials consents is important given their unique risks. FIH trials are the first time a drug is tested in humans. In WO trials, treatment naïve patients receive a therapeutic agent in the window of time between diagnosis and standard of care (SOC) surgery. Our goal was to determine patient-preferred presentation of important information in FIH and WO consent forms. Methods: The study consisted of two phases: (1) analysis of consents for FIH and WO oncology trials open at a cancer center between 2019 and 2022; (2) interview patients who had reviewed consents for FIH or WO trials during the consent process. FIH consents were analyzed for the location(s) of information stating that the study drug has not been tested in humans (FIH info). The WO consents were analyzed for the location(s) of information stating the risk that trial may delay SOC surgery (WO info). Participants were asked about their preferred placement of the information in their own trial’s consent form and whether the consent was clear. Interviews were audio-recorded and double coded. Consent form analysis was compared to patients’ preferences. Results: 25 consents [20 FIH; 5 WO] were analyzed. 19/20 FIH consent forms included FIH info, and 4/5 WO consent forms included WO info. 42 patients were approached [19 FIH; 23 WO]; 34 [17 FIH; 17 WO] participated. 12/17 (71%) WO participants thought that the trial explanation in the consent form was clear. Conversely, only 9/17 (53%) FIH participants found it clear. Conclusions: Patients preferred that the important FIH and WO information be placed early in the consent, though exactly where varied. 82% of FIH participants wanted FIH information in the purpose, while only 19% of WO participants clearly preferred that WO information be in the purpose, and 41% preferred WO information to remain in the risks section. Using consent templates that reflect patient preferences accurately is essential for ethical informed consent; however, a one-size fits all approach may not accurately capture patient preferences, so multiple templates may be necessary. [Table: see text]

Comparison of the Erectile Dysfunction Drugs Sildenafil and Tadalafil Using Patient Medication Reviews: Topic Modeling Study.

BackgroundTopic modeling of patient medication reviews of erectile dysfunction (ED) drugs can help identify patient preferences regarding ED treatment options. The identification of a set of topics important to the patient from social network service drug reviews would inform the design of patient-centered medication counseling.ObjectiveThis study aimed to (1) identify the distinctive topics from patient medication reviews unique to tadalafil versus sildenafil; (2) determine if the primary topics are distributed differently for each drug and for each patient characteristic (age and time on ED drug therapy); and (3) test if the primary topics affect satisfaction with ED drug therapy controlling for patient characteristics.MethodsData were collected from the patient medication reviews of sildenafil and tadalafil posted on WebMD and Ask a Patient. The latent Dirichlet allocation method of natural language processing was used to identify 5 distinctive topics from the patient medication reviews on each drug. Analysis of variance and a 2-sample t test were conducted to compare the topic distribution and assess whether patient satisfaction varies with the primary topics, age, and time on medication for each ED drug. Statistical significance was tested at an alpha of .05.ResultsThe patient medication reviews of sildenafil (N=463) had 2 topics on treatment benefit and 1 each on medication safety, marketing claim, and treatment comparison, while the patient medication reviews of tadalafil (N=919) had 2 topics on medication safety and 1 each on the remaining subjects. Sildenafil’s reviewers quite frequently (94/463, 20.4%) mentioned erection sustainability as their primary topic, whereas tadalafil’s reviewers were more concerned about severe medication safety. Those who mentioned erection sustainability as their primary topic were quite satisfied with their treatment as opposed to those who mentioned severe medication safety as their primary topic (score 3.85 vs 2.44). The discovered topics reflected the marketing claims of blue magic and amber romance for sildenafil and tadalafil, respectively. The topic of blue magic was preferred among younger patients, while the topic of amber romance was preferred among older patients. The topic alternative choices, which appeared for both the ED drugs, reflected patient interest in the comparative effectiveness and price outside the drug labeling information.ConclusionsThe patient medication reviews of ED drugs reflect patient preferences regarding drug labeling information, marketing claims, and alternative treatment choices. The patient preferences concerning ED treatment attributes inform the design of patient-centered communication for improved ED drug therapy.

The Impact of New Surgical Techniques on Geographical Unwarranted Variation: The Case of Benign Hysterectomy.

Since the 1980s, the international literature has reported variations for healthcare services, especially for elective ones. Variations are positive if they reflect patient preferences, while if they do not, they are unwarranted, and thus avoidable. Benign hysterectomy is among the most frequent elective surgical procedures in developed countries, and, in recent years, it has been increasingly delivered through minimally invasive surgical techniques, namely laparoscopic or robotic. The question therefore arises over what the impact of these new surgical techniques on avoidable variation is. In this study we analyze the extent of unwarranted geographical variation of treatment rates and of the adoption of minimally invasive procedures for benign hysterectomy in an Italian regional healthcare system. We assess the impact of the surgical approach on the provision of benign hysterectomy, in terms of efficiency (by measuring the average length of stay) and efficacy (by measuring the post-operative complications). Geographical variation was observed among regional health districts for treatment rates and waiting times. At a provider level, we found differences for the minimally invasive approach. We found a positive and significant association between rates and the percentage of minimally invasive procedures. Providers that frequently adopt minimally invasive procedures have shorter average length of stay, and when they also perform open hysterectomies, fewer complications.

The Ethical Conundrums of “Precision Psychiatry”

The Ethical Conundrums of “Precision Psychiatry”

The Role of Patient-reported Outcomes and Medication Adherence Assessment in Patient-focused Drug Development for Solid Organ Transplantation.

The Role of Patient-reported Outcomes and Medication Adherence Assessment in Patient-focused Drug Development for Solid Organ Transplantation.

Bereaved families’ experiences of end-of-life decision making for general medicine patients

BackgroundFamily involvement in decision making for hospitalised patients is associated with improved end-of-life care. Yet, these discussions can be challenging for physicians and families and associated with distress, confusion and...

Assessment of dermatologist-patient race and ethnicity concordance in the Medicare population

Assessment of dermatologist-patient race and ethnicity concordance in the Medicare population

Exploring approaches to identify, incorporate and report patient preferences in clinical guidelines: Qualitative interviews with guideline developers

BackgroundClinical guidelines informed by patient preferences are more likely to be used and widely advocated, yet research shows that few guidelines reflect patient preferences. ObjectiveExplore how developers generate guidelines informed by patient preferences. Patient InvolvementSeventeen patients were involved as interview participants. MethodsUsing a basic descriptive approach, we conducted and analyzed semi-structured telephone interviews with 50 participants who were involved in developing guidelines on various topics. The sample included 17 patients, 16 clinicians and 17 managers from a total of 7 countries. ResultsParticipants used one or more approaches to identify preferences, patient panelists, focus groups, surveys and review of published research, despite acknowledging they identified similar preferences. Participants said they incorporated preferences in all guideline development steps, but provided little detail of specific processes. Few participants said their guidelines explicitly reported how patients were engaged, preferences identified, or how preferences influenced development processes or the guideline. Enablers were patient and clinician training, supportive coordinators and chairs, involving experienced patients, and assistance from qualitative and review experts. Barriers were finding and preparing patients, clinician skepticism about benefits, and token patient involvement. Participants recommended research on how to generate preference-informed guidelines. DiscussionIdeal approaches to identify, incorporate and report patient preferences in guidelines are unclear and unproven. Practical ValueFindings revealed specific ways that developers can enhance their processes (e.g. patient training, supportive coordinators and chairs, involve experts in qualitative researcher and systematic reviews) and key issues that warrant ongoing research (e.g. how best to incorporate and report preferences).

How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review.

BackgroundClinical guidelines optimize care delivery and outcomes. Guidelines support patient engagement and adherence if they reflect patient preferences for treatment options, risks and benefits. Many guidelines do not address patient preferences. Developers require insight on how to develop such guidelines.ObjectiveTo conduct a scoping review on how to identify, incorporate and report patient preferences in guidelines.SearchWe searched MEDLINE, EMBASE, Scopus, CINAHL, OpenGrey and GreyLit from 2010 to November 2019.EligibilityWe included English language studies describing patient preferences and guidelines.Data extraction and synthesisWe reported approaches for and determinants and impacts of identifying patient preferences using summary statistics and text, and interpreted findings using a conceptual framework of patient engagement in guideline development.ResultsSixteen studies were included: 2 consulted patients and providers about patient engagement approaches, and 14 identified patient preferences (42.9%) or methods for doing so (71.4%). Studies employed single (57.1%) or multiple (42.9%) methods for identifying preferences. Eight (57.1%) incorporated preferences in one aspect of guideline development, while 6 (42.9%) incorporated preferences in multiple ways, most commonly to identify questions, benefits or harms, and generate recommendations. Studies did not address patient engagement in many guideline development steps. Included studies were too few to establish the best approaches for identifying or incorporating preferences. Fewer than half of the studies (7, 43.8%) explored barriers. None examined reporting preferences in guidelines.ConclusionsResearch is needed to establish the single or multiple approaches that result in incorporating and reporting preferences in all guideline development steps.

Disparities in End-of-Life Care in Children Dying of Cancer in Alabama (RP419)

•Inform attendees on rates and trends in pediatric end-of-life care in Alabama.•Demonstrate health disparities in end-of-life care in pediatric cancer in Alabama. Nearly 2,800 children die from cancer annually, yet gaps remain in our understanding of their end-of-life (EOL) care. Racial disparities exist in medical intensity (e.g. mechanical ventilation, hemodialysis) of adult EOL care that do not reflect patient preference. It is unknown if the same racial disparities exist in pediatric oncology EOL, especially among African Americans. To determine rates of and disparities in EOL care for Alabamian children dying of cancer. We conducted a retrospective electronically medical record review of pediatric cancer patients who received their oncology care at Children's of Alabama and died between 2012 and 2018. We collected sociodemographics and clinical and EOL care details. We calculated rates 1) hospital death, 2) receiving medically intense interventions in the last 30d of life, 3) having ≥2 intensity indicators, 4) palliative care consultation. We constructed multivariable regression models to determine the association between clinical and sociodemographic variables and the above outcomes. Of the 150 patients, the average death age was 11y (STD: 6.8), 40% had a primary diagnosis of non-CNS solid tumor, and 35% were African American. Forty-six percent died in the hospital, 57% received medically intense care, 79 % ≥2 intensity indicators, and 58% a palliative care consultation. Non-white individuals (primarily African American) were more likely to receive medically intense EOL care (AOR: 2.6, 95% CI: 1.1-5.9) than non-Hispanic white patients. Patients with hematologic malignancies had greater odds of receiving medically intense EOL care (3.1, 1.1-8.8) and dying in the hospital (3.7, 1.2-11.0) than patients with central nervous system (CNS) tumors. This is the first study to examine patterns of care and disparities of EOL care for children with cancer in the Deep South. It is critical to determine if the racial disparities found are goal concordant or due to systemic issues such as lack of hospice access.

The Impact of Clinical Pharmacists in Hematopoietic Stem Cell Transplant (HSCT) Outpatient Clinic at an Academic Medical Center

<h3>Background</h3> Pharmacists are increasingly identified as vital members of the HSCT multidisciplinary team. At our institution, pharmacists recently established roles providing clinical pharmacy services in the outpatient setting focused on performing interventions during the pre-HSCT clinic visit. <h3>Objectives</h3> The primary objective was to evaluate the number of medication discrepancies identified during pre-HSCT clinic visits performed by pharmacists, defined as addition, removal, or dose adjustment of current medications. Secondary objectives were to evaluate the number of interventions made by pharmacists for drug interactions, chemotherapy dose adjustments, and other medication recommendations for all patients prior to HSCT. <h3>Methods</h3> A retrospective review of all patients admitted for HSCT from August 2018 to 2019 was performed. Patients are seen by their HSCT provider about 1 week prior to HSCT. At this visit, oncology trained pharmacists specializing in HSCT meet with the patient and provide services such as medication reconciliation, screening for drug interactions, screening for pertinent medication allergies/ intolerances and identifying alternatives, assessing medication adherence, evaluating need for chemotherapy dose adjustments, and identifying barriers to medication access. Patients that are unable to be seen by the pharmacist receive extensive chart review prior to admission to identify medication interventions. <h3>Results</h3> HSCT pharmacists performed 150 pre-HSCT clinic visits for 88 (59%) autologous, 46 (31%) allogeneic, and 16 (11%) Chimeric Antigen Receptor Therapy (CAR- T) recipients. A total of 511 medication discrepancies were identified in 128 (85%) patients seen (Figure 1). In addition to the 150 patients seen, 88 patient charts were reviewed by a pharmacist. A total of 66 significant drug interactions requiring intervention were identified in 52 (22%) patients and 30 chemotherapy dose adjustments were implemented in 29 (12%) patients. Other medication recommendations were made to the provider for 109 (46%) patients. Examples of these interventions include stopping oral chemotherapy prior to HSCT, modifying supportive care medications to reflect patient preference and prior response, modifying hydration due to cardiac history, coordinating steroid tapers before haploidentical HSCT or CAR-T, adjusting prophylactic antimicrobials due to allergies or to meet institutional standards, coordinating refills, and developing a plan for non-formulary medications. <h3>Conclusions</h3> Pharmacists play a crucial role in providing safe and effective care to HSCT patients, and their involvement in the multidisciplinary team can lead to significant clinical interventions. Future directions include expansion of the role of HSCT pharmacists through Pharmacy Consult Agreements, focusing on HSCT patients post-transplant and within a Survivorship Clinic.

Settled science or unwarranted variation in local anesthetic dosing? An analysis from an International Registry of Regional Anesthesiology

BackgroundVariation in clinical practice is often considered unwarranted when it does not reflect patient preference or evidence-based medicine. Complications from regional anesthesia such as nerve injury and systemic toxicity are...

Patient Beliefs and Preferences Regarding Surrogate Decision Makers.

Many patients lose the capacity to make medical decisions because of severe illness or the effects of sedation or anesthesia. Most states in the United States designate the next of kin (NOK) as a default surrogate decision maker (SDM), but this may not always reflect patient preferences. Our objective was to determine how frequently the default SDM matched the patient's preferred SDM, and whether patients knew who would serve as their SDM should they become incapacitated. We used a cross-sectional survey to determine whom patients believed would make decisions on their behalf, patients' relationship to their preferred SDM, how frequently their NOK was their preferred SDM, and how frequently patients' beliefs about SDM determination were accurate. In total, 18% of patients believed that someone other than their NOK would be asked to make decisions for them; 20.3% of all participants, and 9.3% of married participants, identified someone other than their NOK as their preferred SDM. A substantial proportion of patients are unaware that someone other than their preferred SDM may be asked to make decisions for them. Providers should explicitly ask patients about their preferences, including whom the patient's preferred SDM would be, and should encourage the patient to designate a healthcare proxy when his or her preferred SDM is not the default SDM designated by local law. Although there are inherent problems with using SDMs, using the person preferred by the patient should result in a greater chance of following the patient's wishes for medical treatment.

Health State Utility Values for Ileostomies and Colostomies: a Systematic Review and Meta-Analysis

BackgroundIleostomies and colostomies may affect the quality of life of patients after colorectal surgery; however, the impact has been difficult to quantify using questionnaire-based measures. Utilities reflect patient preferences for health states and provide an alternate method of quality of life assessment. We aimed to systematically review the literature on utilities for ileostomy and colostomy health states. MethodsWe searched MEDLINE, EMBASE, and EBM Reviews (to August 16, 2017) to identify studies reporting utilities for colostomies or ileostomies using direct or indirect, preference-based elicitation tools. We categorized utilities based on elicitation group (patients with stoma, patients without stoma, healthcare providers, general population) and tool. We pooled utilities using random effects models to determine mean utilities for each elicitation group and tool. ResultsWe identified ten studies reporting colostomy utilities and three studies reporting ileostomy utilities. Utilities were most commonly obtained using direct elicitation measures administered to individuals with an understanding of the health state. Patients with stomas and providers gave high utility ratings for the colostomy state (range 0.88–0.92 and 0.86–0.92, respectively, using direct elicitation tools). Ileostomy utilities obtained from patients following surgery and from providers also demonstrated high values placed on the ileostomy health state (range 0.88–1.0). ConclusionsFollowing stoma surgery, values placed on quality of life are similar to those obtained from patients with conditions such as asthma and allergies or individuals of similar age without chronic conditions. This confirms the findings of questionnaire-based studies, which report minimal long-term decrements to overall quality of life among stomates.

OP80 Reconciling Ethical And Economic Notions Of ‘Value’ For HTA

Introduction:Different disciplinary frameworks in the field of Health Technology Assessment (HTA) may hold different, and potentially contradictory, assumptions about a technology's value or optimal use. For example, economic analyses may be based on outcome measures that are socially controversial or ethically problematic. This can result in economic and ethical evaluations that are difficult to reconcile, leaving HTA short of its goal to provide policy decision-makers with a holistic assessment of technology. We use the case of non-invasive prenatal testing (NIPT) to explore whether the capabilities approach can be used to align economic and ethical concepts of value in assessments of morally challenging health technologies. The capabilities approach is an economic framework which bases wellbeing assessments on a person's abilities, rather than their expressed preferences.Methods:To develop concepts for capabilities relevant to NIPT, we started with Nussbaum's capabilities framework, and conducted a directed qualitative content analysis of interview data from twenty-seven Canadian women with personal experience of this technology.Results:We found that eight of Nussbaum's ten capabilities related to options or choices that women valued in the context of NIPT, and identified one new capability, Care Taking. NIPT has a meaningful impact on women's capabilities, and capabilities concepts can capture the value of NIPT without relying on health outcomes of ambiguous social and ethical value. A capabilities approach may help reconcile ethical and economic value frameworks for NIPT.Conclusions:The capabilities approach can contribute to economic evaluations of morally challenging health technologies that better reflect patient preferences and ethical concerns, and may contribute to more holistic HTAs. It provides a framework within which policy analysts from diverse disciplines can communicate about the social and ethical value of morally challenging health technologies. Future research should focus on operationalizing the capabilities approach for use in evaluations of NIPT and other morally challenging health technologies.