Patient Priorities Research Articles

Personalised care for hyperlipidaemia by tailoring shared decision-making toward patient priorities & needs: results from a patient-led study

Abstract Background The European cardiovascular disease community is actively promoting a shift towards delivering more personalized cardiovascular care. This shift requires a reassessment of current clinical approaches, including approaches to shared decision-making. To be effective, shared decision-making should be grounded in factors impacting treatment adherence and oriented toward patient-relevant outcomes. (1)(2) Purpose To learn from people with hyperlipidemia about their experiences, priorities and needs inside and outside the health system, including pathways and barriers to diagnosis, treatment and adherence. These insights can guide healthcare providers (HCPs) in delivering personalised, patient-centred care. Methods A global Steering Committee of patient advocates, cardiology researchers and HCPs guided study design and interpretation. Forty-six individuals with confirmed high cholesterol (51% female) in Brazil, Australia and the US participated in 60-minute interviews. Half of participants were required to have a prior hospitalization for an ASCVD event. Transcripts were analyzed using a team-based approach. Results Participants are described in Picture 1. Across countries, participants described how HCPs can work with patients to personalize care through realistic, individualized care plans. First, HCPs can make patients more comfortable by using plain language (e.g., heart problems not cardiovascular events) and clearly explain the life-threatening dangers of unmanaged LDL-C, a prerequisite for patients to take high cholesterol management seriously. Once the risks are clear, HCPs and patients can co-develop care plans based on attainable, measurable goals. Topics that should be discussed include individual circumstances that may impact care plan adherence, such as competing priorities (e.g., work travel or family obligations), support system, and finances. Other topics include the range of treatments and lifestyle changes, including how these work in tandem. When discussing treatment options, HCPs can address treatment attributes desirable to patients, including convenience, treatment benefits, safety profiles and costs. Convenience attributes reflect participant desires for therapies that come in a form they are comfortable administering (e.g., tablet, injection) combined with a desire to minimize administration frequency. Meaningful treatment benefits include improving laboratory values, avoiding heart-related events and living longer to spend more time with family. Conclusions: This study identified topics patients would like their HCP to include in shared decision-making. It can inform HCP efforts to deliver personalised cardiovascular care. Structural barriers to effective shared decision-making exist in many health systems, including the time HCPs have allotted to appointments, administrative burden and access. Patient advocacy organisations and HCP organisations can partner to drive policy changes to overcome these barriers.Study ParticipantsIllustrative Quotes

Increased frailty is associated with risk of hospital-acquired infections and death during heart failure hospital admissions

Abstract Background Frailty is common in patients admitted with acute decompensation of heart failure (ADHF) and it is unclear how the frailty syndrome affects heart failure (HF) patients during their acute hospital admission. Understanding the interplay between frailty, impaired renal function, hospital-acquired infections (HAI), and death may be useful in optimising patient care and prognosis. Purpose The aim of this analysis was to explore the relationship between admission frailty levels and the incidence of HAI, acute kidney injury (AKI), and mortality in acute HF hospital admissions. Methods This is a retrospective analysis of data submitted from a single centre to the National HF audit between January and June 2023. Additional frailty and baseline renal function data was retrospectively collected from electronic patient health records. Patients were categorised into three groups according to their Rockwood Clinical Frailty Scale (CSF) (1): no/mild frailty (CFS 1-3), moderate frailty (CFS 4-6) and severe frailty (CFS 7-9). AKI was defined based on baseline and admission creatinine, as per KDIGO guidelines (2). Chi-squared and t-tests were used to compare baseline characteristics between frailty groups. Chi-squared tests were used to compare frailty groups in terms of: HAI, AKI, mortality. Results Between 1st January and 22nd June 2023, there were 344 acute HF hospital admissions in our centre. Most patients had moderate frailty on admission (n=256, 74.4%). Frail patients were significantly older, had a lower admission mean haemoglobin and more were female, compared to non-frail patients (Figure 1A). Patients who were more frail were more likely to experience HAI during their admission; p=0.035 (figure 1B). Furthermore, patients with HAI had a greater risk of mortality, at a median follow-up of 171 (IQR 100.25) days after admission, compared to those without HAI (p>0.001). 41.9% of acute HF admissions were associated with an AKI, and although numerically more frail patients had an AKI, this did not achieve statistical significance (p=0.084). Patients who were more frail were more likely to die, both during hospital admission and at 3 months following discharge; p<0.001 (Figure 1B). Furthermore, this trend persisted after follow-up; p<0.001 (Figure 2). Conclusions Patients with moderate or severe frailty are at greater risk of adverse events (HAI, death) during an acute HF hospital admission, than patients with no or mild frailty. It is imperative to consider the frailty status of all patients with ADHF, to be aware of the frailty-associated risks, and act proactively with targeted interventions (screen for infections, daily bloods, early conversations with patients and their families about treatment escalation plans and patient priorities) to improve outcomes and enhance the quality of care for this vulnerable patient population. Further research is warranted to explore potential interventions to address frailty-related risks in HF management.

Patient-Reported Hair Loss and Its Impacts as Measured by the Alopecia Areata Patient Priority Outcomes Instrument in Patients Treated with Ritlecitinib: The ALLEGRO Phase 2b/3 Randomized Clinical Trial.

The ALLEGRO phase 2b/3 study investigated the efficacy and safety of ritlecitinib in patients with alopecia areata (AA). To describe the impact of ritlecitinib on patient-reported hair loss using the Alopecia Areata Patient Priority Outcomes (AAPPO) instrument and evaluate the relationship between clinically meaningful hair regrowth and improvements in patient-reported impacts. In ALLEGRO-2b/3, patients aged ≥ 12 years with AA and ≥ 50% scalp hair loss received once-daily ritlecitinib 50 or 30 mg (± 4-week 200-mg daily loading dose), 10 mg, or placebo for 24 weeks andthen continued ritlecitinib or switched from placebo to ritlecitinib 200/50 or 50 mg for 24 weeks. The AAPPO instrument evaluated improvement in hair loss, emotional symptoms (ES), and activity limitations (AL) from weeks 4 to 48 (secondary endpoint). Mean changes in ES and AL domain scores and individual items at weeks 24 and 48 were calculated for Severity of Alopecia Tool (SALT) score ≤ 20 responders and nonresponders (exploratory endpoint). Overall, 718 patients were randomized. At week 24, 5-36% of patients receiving ritlecitinib 10-200/50 mg reported improvement in scalp hair loss versus 9% receiving placebo. The results for eyebrow, eyelash, and body hair loss were similar. Mean change from baseline in ES and AL scores at weeks 24 and 48 was small and similar between groups. Mean change was larger for individual hair loss and ES items at weeks 24 and 48 in SALT score ≤ 20 responders versus nonresponders. The AAPPO instrument demonstrated the beneficial impact of ritlecitinib on patient-reported hair growth, which was consistent with improvements in clinician-reported outcomes. NCT03732807. INFOGRAPHIC.

Surgical Recovery Through the Lens of Patients with Colorectal Disease: A Qualitative Study in an Enhanced Recovery after Surgery Setting.

As perioperative care shifts to a more patient-centered model, understanding needs and experiences of patients is vital. Gaining such insight can enhance the alignment of care with patient priorities, encouraging adherence to recovery-oriented interventions. We aimed to explore patient-defined recovery and the elements that modify the recovery process for patients with colorectal disease under Enhanced Recovery After Surgery (ERAS) care. A qualitative study was conducted at an ERAS-participating hospital in Alberta, Canada, between April 2018 to June 2019. A co-design focus group set the research direction and semi-structured interviews were conducted postoperatively in hospital or within 3 months post-discharge. Diverse patient ages and colorectal conditions were targeted through purposive sampling. Interviews were transcribed verbatim and analyzed through manifest and latent content analysis. Twenty patients with mean age 62 (SD:13) years and 45% with cancer (n=17 interview, n=2 focus group and interview, n=1 focus group only) were enrolled. Recovery was defined by patients as the return to normal routines and four themes were identified. First, Phases of recovery: recovery was described as multidimensional phases distinctively as early, late/long-term, and the endpoint. Second, Recovery facilitators: recovery was supported through positive mindsets, conscious recovery, and taking an active role. Third, Recovery barriers: recovery was hindered by negative mindsets and treatment side-effects. Finally, Recovery catalysts: communication, autonomy, and expectations facilitated active or passive recovery. Our patient-oriented recovery model may contribute a new dimension to the ERAS framework by capturing patients' recovery experiences. Further research is encouraged to explore its value in enhancing patient-centered care within ERAS.

African American Patients' Perspectives on Determinants of Hemodialysis Adherence and Use of Motivational Interviewing to Improve Hemodialysis Adherence.

Compared to White patients, African American (AA) patients have a four-fold higher prevalence of kidney failure and higher hemodialysis non-adherence. Adherence behaviors are influenced by psychosocial factors, including personal meaning of a behavior and self-confidence to enact it. We assessed perspectives of AA hemodialysis patients on unique factors impacting dialysis adherence, and use of motivational interviewing, an evidence-based intervention, to improve these factors, dialysis adherence, and outcomes in AAs. Self-identified AA hemodialysis patients (N=22) watched a brief video describing motivational interviewing and then completed a semi-structured interview or focus group session. Interview questions explored unique barriers and facilitators of hemodialysis adherence in AAs, and perceived utility of motivational interviewing to address these obstacles. Verbatim transcripts and an iterative inductive/deductive approach were used to develop a hierarchical coding system. Three experienced coders independently coded the same two transcripts. Coding was compared and discrepancies were reconciled by a fourth coder or consensus. Transcripts, quotations, and codes were managed using Microsoft Excel 2016 and SPSS version 28.0. Themes and sub-themes emerged and culminated in a novel conceptual model informed by three theoretical models of behavior change: Theory of Self-Care Management for Vulnerable Populations; Social Cognitive Theory; and Self Determination Theory. This conceptual model will inform the design of a culturally tailored, motivational interviewing-based intervention to improve dialysis adherence in AAs. Integrating AA hemodialysis patient perspectives is critical for enhancing dialysis care delivery and the design of effective interventions such as motivational interviewing to improve dialysis adherence in AA and promote kidney health equity. AA hemodialysis patients view motivational interviewing as a tool to clarify patient priorities, build trust, and promote patient-provider therapeutic alliance. Cultural tailoring of motivational interviewing to address unique barriers of AAs with kidney failure will improve adherence and health outcomes in these vulnerable patients.

"Ups and Downs, Joys and Sorrows" - Assessment and Clinical Relevance of Patient Priorities in an Interdisciplinary Parkinson's Disease Clinic.

Barriers to communication and inaccurate provider assumptions about patient priorities limit the delivery of comprehensive, high-quality, patient-centered care (PCC) to people with Parkinson's (PWP). This study aimed to analyze priorities of PWP using a qualitative, unstructured single-question survey and to test associations with validated quality of life (QOL) measures. During appointments at a subspecialty, interdisciplinary clinic, PWP (n=139) provided written responses to the prompt: "What is important for your care team to know about you?" Patient Health Questionnaire, Montreal Cognitive Assessment, and Hoehn and Yahr scales were obtained through retrospective chart review. Key qualitative themes were identified through grounded theory analysis, and associations with quantitative health measures were tested with correlation analyses. Common themes included participant health (eg, PD-related goals and comorbidities), non-illness identities (eg, family or community role), and the psychosocial impact of PD (eg, losing independence and uncertainty). Positive sentiments (n=73), such as motivation and optimism, were more common than negative sentiments (n=45), such as loss and fear. There was moderate concordance between worsened mental health and uncertainty (rho=0.206, p=0.02) and inverse concordance between worsened mobility and gratitude (rho=-0.174, p=0.04). The range of priorities that PWP want to share with their care team is more diverse than that of common provider assumptions, is correlated with clinical outcomes such as mental health and mobility, and may not be captured by existing QOL assessment tools. An open-ended, qualitative prompt should be incorporated into routine specialist care for PWP as a valuable QOL indicator.

NHS Sussex ICB Urgent Dental Care and Stabilisation Pilot Part 1 - A new approach to addressing a critical patient priority

NHS Sussex ICB Urgent Dental Care and Stabilisation Pilot Part 1 - A new approach to addressing a critical patient priority

Preferences of patients and physicians in the United States for relapsed/refractory follicular lymphoma treatments.

Patients with follicular lymphoma (FL) often relapse or become refractory to treatment (R/R). While the R/R FL treatment landscape evolves, little is known about the priorities of patients and physicians. This discrete-choice experiment (DCE) study assessed patients' and physicians' treatment preferences, and the trade-offs they would be willing to make between efficacy, tolerability, and administration. An online survey was conducted in US-based patients (≥18 years) with R/R FL and FL-treating physicians. The DCE was informed by a targeted literature review, clinical data, expert oncologist input, and pilot interviews. Participants completed eight experimental choice tasks where they chose between two hypothetical treatment profiles defined by six attributes: progression-free survival (PFS), administration/monitoring, risks of laboratory abnormalities requiring intervention, severe infections, diarrhea, and cytokine release syndrome (CRS). Relative attribute importance (RAI) and willingness to trade-off between PFS and other attributes were estimated. Two-hundred patients (mean age 63.5 years; median three prior lines of therapy) and 151 FL-treating physicians participated. Increasing PFS was most important for both groups, although it was relatively less important to patients than physicians (RAI 35.2% vs. 45.7%). Administration/monitoring was three times more important to patients than physicians (RAI 28.8% vs. 9.5%); patients preferred oral treatment and would be willing to tolerate a significant reduction in PFS for oral administration over weekly intravenous infusions. Avoiding CRS was less important to patients than to physicians (RAI 7.7% vs. 15.8%). Both groups would accept shorter PFS for reduced risks of side effects (especially of laboratory abnormalities for patients and of CRS for physicians). Although PFS was the most important attribute to patients and physicians, both would tolerate lower PFS for reduced side effects. Patients would also accept a substantial reduction in PFS for oral administration. Differences between the preferences/priorities of patients and physicians highlight the importance of shared decision-making.

'So Let's Go On Like This?'-Shared Decision-Making and the Use of Outcome Information in Routine Care Management for People With Multiple Sclerosis.

This study aimed to investigate how shared decision-making (SDM) and the use of different types of outcome information are applied in routine care management for people with multiple sclerosis (MS) in an academic outpatient clinic. This qualitative study used the following: (a) observations of clinical encounters (N = 23) between patients and healthcare professionals (HCPs), (b) interviews with those patients (N = 17)and (c) interviews with those HCPs (N = 7). HCPs were not trained in SDM before the study. Audio recordings were transcribed literally. Transcriptions were analysed using qualitative thematic analysis. Outcome information was hardly discussed with patients, apart from clinical outcome information at an individual level, such as MRI or lab results. This use of clinical outcome information did not automatically lead to a process of SDM. HCPs tended to implicitly present choices to patientsafter signalling and discussing 'problems'. In the interviews, patients indicated that they tended to consent to the advice given by HCPs and to prefer not too much change in treatment plans. However, they also emphasized the importance of being informed about available options with benefits and harms. We observed multiple discussions about patients'preferences, especially related to patients'experiences and priorities. Overall, SDM and the use of different types of outcome information did not seem to be enacted in routine care management for people with MS, mostly because choices werenot explicitly mentioned or discussed. However, discussions about patients'experiences and priorities did take place. Training HCPs further and developing patient information seem reasonable steps to proceed. People with MS contributed as research participantsand provided us with their experiences in interviews. Furthermore, representatives of two patient organizations contributed to the study by reviewing the interview protocol for people with MS.

Facing Cancer as a Chronic Disease: Shared Decision-Making at Critical Points in a Long Illness Journey

This is the third installment of a three-part series on decision support tools and shared decision-making. The first two articles centered on the devel­opment of person-centered standards for decision support tools and creating a taxonomy for classifying them.1,2 In this article, we describe how patients with­in three diverse communities who are living with cancer understand and make shared decisions. We used interactive sessions and storytelling in a qualitative setting to assess what matters to patients and caregivers, what language they use to describe their decision-making processes, and how individuals perceive their interactions with their health care providers. We also included qualitative assessment of the regional factors that affect equitable access to health care in the communities included in the study. For the second year of this work, we will combine the quantitative data from the first two articles with more in-depth analysis of patient priorities and values to develop and test prototypes of deci­sion support tools for this target population.

Palliative and End of Life Care: An Important Component of Supportive Oncology.

Palliative care, an integral component of supportive oncology, enhances the quality of life for patients living with cancer. Whilst palliative care has historically been synonymous with the provision of care at the end of life, it is increasingly playing a role earlier in a patient's cancer journey; frequently in conjunction with administration of anticancer treatment. Although early integration has been shown to improve patient outcomes, service development remains in its infancy and consideration of challenges bears relevance. Addressing issues pertaining to resource allocation in addition to adequate training of staff will aid to ensure the provision of care that aligns with the goals and priorities of patients. This review presents the role of early palliative care within the realm of supportive oncology with respect to the evidence of benefit and ethical, clinical and practical considerations. Relevant papers have been chosen for inclusion on the basis of clinical relevance, timeliness and relevance to cancer patients and clinical teams involved in their care.

Decision regret following surgical management of pilonidal disease.

Surgical decision making in the context of pilonidal disease (PD) can be challenging. Current evidence for the management of PD is inadequate and optimum treatment is not clear. This paper reports on patient experience of shared decision making (SDM) and decision regret following surgical management of PD. The Pilonidal Trial. Studying the Treatment Options (PITSTOP) study (ISRCTN95551898) is a prospective cohort study of patients with PD treated between May 2019 and March 2022. This subanalysis reports the results of quantitative data capture between baseline and 6 months post-procedure. Baseline data consisted of patient and disease characteristics, surgical procedure and impression of SDM. Post-procedure data consisted of operative outcomes and decision regret. Multiple linear regression analysis was used to analyse the relationship between clinical outcomes and decision regret. Overall, 677 patients were included, and follow-up data to 6 months were available for 476 (71%). Most (59.5%) patients underwent major excisional surgery; 45.1% of patients experienced a postoperative complication. Participant impression of SDM was positive, with a median CollaboRATE mean-score response of 3 (interquartile range: 3-4). Of the patients who underwent a 'leave open' approach, 20.6% were dissatisfied or very dissatisfied with their treatment. Postoperative complications (β = 3.21, 95% CI: -12.75 to 7.25, p < 0.001) and disease recurrence (β = 11.5, 95% CI: -10.6 to 9.4, p < 0.001) were both associated with higher rates of decision regret. The clinical outcomes, postoperative complications and recurrence, were associated with higher levels of decision regret. Surgeons treating patients with PD should practice SDM and ensure that patient priorities inform treatment approach.

Rapid Eczema Trials: addressing patient priorities from the eczema Priority Setting Partnership

We describe the Rapid Eczema Trials co-production project, which aims to plug some of the research gaps that remain following the 2011 James Lind Alliance Eczema Priority Setting Partnership (PSP) exercise. We highlight similarities between research priorities that have been recently identified by our eczema citizen science community and the original PSP priorities. This work shows that answering the fundamentals about self-management of eczema is still important to people with eczema and that the Rapid Eczema Trials project provides a means by which we can address patient priorities.

Developing an Individualized Patient Decision Aid for Chronic Coronary Disease Based on the ISCHEMIA Trial: A Mixed-Methods Study

BACKGROUND: Pursuing initial invasive or conservative management of chronic coronary disease (CCD) is a preference-sensitive decision that should include shared decision-making. Communicating the benefits of either approach is challenging, as individual patients rarely achieve the population-averaged outcomes reported in clinical trials. Our objective was to develop a patient decision aid (PDA) with patient-specific estimates of outcomes for initial invasive versus conservative management of CCD, based on the ISCHEMIA trial (International Study of Comparative Health Effectiveness With Medical and Invasive Approaches). METHODS: This was a multiphase mixed-methods study using focus groups of outpatients with CCD, caregivers, clinicians, and researchers. Focus groups were held in Kansas City, MO and New York City, NY between September 2021 and June 2022. Patients with CCD were included if they had a positive stress test within 1 year. Phase 1 focused on patient priorities for outcomes to guide treatment decisions. Phase 2 involved PDA development and refinement. Phase 3 involved further refinement and member checking. Key themes involving shared decision-making and treatment preferences were elicited from focus groups using a deductive approach to develop a PDA representing the outcomes most important to patients. RESULTS: Of 46 patient and caregiver participants, the mean age was 63.5 years, 53% were female, 61% were White, 24% were Black, and 9% were Hispanic. When deciding between treatments, participants valued shared decision-making but generally deferred decisions to clinicians. The outcomes most important to participants were survival and quality of life, followed by physical functioning and symptoms. To represent these outcomes, participants favored simple visualizations, such as a speedometer or health meter. When deciding between treatment options, participants preferred to use the PDA collaboratively with a clinician instead of as a stand-alone tool. CONCLUSIONS: Our novel, patient-centered approach to developing a PDA for CCD with patient-specific outcomes has the potential to rapidly translate clinical trial results to individual patients and support shared decision-making.

Measurement of Patients' Acceptable Symptom Levels and Priorities for Symptom Improvement in Advanced Prostate Cancer.

Limited research has evaluated the success criteria and priorities for symptom improvement of patients with cancer to inform patient-centered care. In this study, we adapted and tested a measure of these constructs, the Patient-Centered Outcomes Questionnaire (PCOQ), for patients with advanced prostate cancer. We compared acceptable symptom severity levels following symptom treatment across 10 symptoms and identified patient subgroups based on symptom importance. Patients with advanced prostate cancer (N = 99) participated in a one-time survey, which included a modified version of the PCOQ, standard symptom measures, and additional clinical characteristics. The modified PCOQ demonstrated construct validity through its correlations with related theoretical constructs. There was a moderate correlation between symptom severity and importance. Acceptable symptom severity levels were generally low, with sexual dysfunction having a higher acceptable severity than most other symptoms. Three patient subgroups were identified: (1) those who rated all symptoms as low in importance (n = 43); (2) those who rated all symptoms as moderately important (n = 33); and (3) those who rated all symptoms as highly important (n= 18). Subgroups were associated with functional status, fatigue, sleep problems, pain, and emotional distress. The modified PCOQ demonstrated preliminary evidence of construct validity. Patients generally considered low symptom severity to be acceptable, with variations across symptoms. Results suggest that symptom severity and importance are related but distinct aspects of the symptom experience in advanced prostate cancer. Patients' diverse priorities for symptom improvement point to the need for individualized treatment plans.

Patient Preferences and Expectations in Analgesia for First Trimester Surgical Abortion

&lt;i&gt;A central component of a patient’s abortion experience is pain perception and optimization of pain management choices. Yet, data on patients’ experience of pain and their preferences regarding pain strategies are limited and tend to utilize solely quantitative data. This study utilized a qualitative thematic analysis to identify patient priorities, preferences, and expectations for pain management during first-trimester surgical abortion with nitrous oxide or oral sedation. Thirty-one patients seeking a first-trimester surgical abortion, self-selecting inhaled nitrous oxide (NO) (16 patients), or oral sedation (PO) with oxycodone and Ativan (15 patients) enrolled in this prospective cohort study. Participants provided demographic data, rated procedure pain on a 10 cm visual analog scale (VAS), and participated in semi-structured interviews. We analyzed qualitative data using a content analysis approach. Pre-procedure participants wanted a positive experience. Participants endorsed an ideal analgesic as having a quick onset of action, minimal side effects, no addiction potential, and being effective at reducing pain. After the procedure, there we start differences between priorities in NO and PO participants. NO participants valued the resumption of everyday activities, while PO participants desired ongoing anxiolysis. Anticipatory counseling often mitigated higher procedure pain and more medication side effects than anticipated. Participants emphasized that positive interactions with providers/staff significantly improved their abortion experience. Preemptive comprehensive counseling about procedure and analgesic effectiveness, along with providing options for analgesia, will facilitate an affirmative and patient-centered abortion experience.&lt;/i&gt;

All that can still be done: Communicating with precision and patient-centeredness when recommending hospice initiation for cancer patients.

Through careful word choice and never‐ending presence, oncology teams can provide ongoing, and even amplified support and care for hospice‐eligible patients and caregivers. Voicing nonabandonment, eliciting patient priorities and concerns, and making clear the myriad benefits of hospice care resources can all help oncology clinicians deliver high quality end‐of‐life cancer care.

Transgender and Nonbinary Individuals' Perceptions Regarding Gender-Affirming Hormone Therapy and Cardiovascular Health: A Qualitative Study.

Transgender and nonbinary individuals face substantial cardiovascular health uncertainties. The use of gender-affirming hormone therapy can be used to achieve one's gender-affirming goals. As self-rated health is an important predictor of health outcomes, an understanding of how this association is perceived by transgender and nonbinary individuals using gender-affirming hormone therapy is required. The objective of this research was to explore transgender and nonbinary individuals' perceptions of cardiovascular health in the context of using gender-affirming hormone therapy. In this qualitative study, English-speaking transgender and nonbinary adults using gender-affirming hormone therapy for 3 months or more were recruited from across Canada using purposive and snowball sampling methods. Semistructured interviews were conducted through videoconference to explore transgender and nonbinary individuals' perceptions of the association between gender-affirming hormone therapy and cardiovascular health between May and August 2023. Data were transcribed verbatim, and transcripts were analyzed independently by 3 reviewers using thematic analysis. Twenty-one participants were interviewed (8 transgender women, 9 transgender men, and 3 nonbinary individuals; median [range] age, 27 [20-69] years; 80% White participants). Three main themes were identified: cardiovascular health was not a primary concern in the decision-making process with regard to gender-affirming hormone therapy, the improved well-being associated with gender-affirming hormone therapy was felt to contribute to improved cardiovascular health, and health care provider knowledge and attitude facilitate the transition process. Gender-affirming hormone therapy in transgender and nonbinary individuals is perceived to improve cardiovascular health. Given the positive associations between care aligned with patient priorities, self-rated health, and health outcomes, these findings should be considered as part of shared decision-making and person-centered care.

1886P Expectations and priorities of older patients with cancer: The PRIORITY multicenter cohort study

1886P Expectations and priorities of older patients with cancer: The PRIORITY multicenter cohort study

Psychometric Properties of the EQ-5D-5L in Patients with Alopecia Areata.

For many decision makers in Health Technology Assessment the EQ-5D-5L is the standard measure of health-related quality of life (HRQL). However, evidence has shown the limitations of the measure in certain disease areas, including dermatology. Alopecia areata (AA) is associated with a significant HRQL impact, partly due to the emotional impact of hair loss. This study explores the psychometric properties of the EQ-5D-5L in people with AA in reference to the short-form 36 version 2 (SF-36v2), the Alopecia Areata Patient Priority Outcomes (AAPPO), the Severity of Alopecia Tool (SALT) and the Patient Global Impressions of Change (PGI-C). Data from participants with AA enrolled in the ALLEGRO-2b/3 trial (NCT03732807) of ritlecitinib were analysed. Participants completed the AAPPO measure (an AA-specific measure assessing emotional symptoms and activity limitations), PGI-C, EQ-5D-5L and SF-36v2 across 48-weeks of follow up. Extent of scalp hair loss was assessed using the SALT. Ceiling effects, known groups validity, convergent validity and responsiveness were examined. Known groups were defined by SALT score and a PGI-C defined response from baseline. Exploratory factor analysis was also performed. Data were available from 612 adult participants. Ceiling effects were observed for the EQ-5D-5L (55.3-61.2%) and analyses suggested that the EQ-5D did not capture important differences between patients that the SF-36v2 did. The EQ-5D-5L very weakly correlated with SALT score, whereas the AAPPO correlated more strongly with the extent of hair loss. Compared with the EQ-5D-5L, the AAPPO was better able to discriminate between known groups defined by SALT and PGI-C. An exploratory factor analysis suggested that the EQ-5D-5L had limitations in content validity compared with the AAPPO. The EQ-5D-5L may not adequately measure the burden of AA on patients' HRQL. Insensitivity to the burden of AA suggests that the EQ-5D-5L may not measure treatment-related benefit with hair regrowth. Data from other measures could be considered if they are shown to be more relevant.