Patient Priorities Research Articles

Generic vs. Disease-Specific Patient Reported Outcome (PRO) Instruments for Assessing HRQoL Burden Among Patients Diagnosed with Alopecia Areata: Evidence from TARGET-DERM AA

Introduction Alopecia areata (AA) is a chronic, autoimmune disease characterized by patchy hair loss. Compared to other disease areas, recent work has signaled a potential shortcoming, that generic quality of life (QOL) questionnaires are not sufficiently sensitive to the impact of AA disease severity. This cross-sectional analysis investigates the Short-Form 36, the dermatology life quality index (DLQI), and the Alopecia Areata Patient Priority Outcomes (AAPPO) for similar shortcomings. Methods Patients of all ages enrolled from December 2021 to June 2024 in TARGET-DERM AA (data collection on-going) in the United States and Canada were grouped by Severity of Alopecia Tool (SALT) score (1-20, 21-49, or 50-100). At enrollment, patients completed the AAPPO and DLQI questionnaire as well as the RAND MOS Short-Form 36. The SF-36 has 8 subdomain scores (vitality, physical function, bodily pain, general health, physical role function, emotional role function, social role function, mental health) along with the physical component summaries (PCS), mental component summaries (MCS), and the SF-6D utility index score. The Kruskal-Wallis test compared differences in mean scores across SALT subgroups defined by severity. Results Of the 141 AA patients, 61.7% were female; 95.0% adults, and 67.4% Non-Hispanic White. When comparing the SALT 1-20 and the >50 subgroups, significant differences in SF-36 derived mean scores were only observed in the PCS and the physical function score (p<0.05). None of the other scores (MCS, SF-6D, or other SF-36 subdomains) showed any differences. Mean DLQI scores were similar across subgroups (p>.05) Notably, the hair loss and activity limitation domains of the AAPPO demonstrated significant differences between the patient subgroups (p<.0001 and p<.05, respectively) Discussion In this real-world cohort, generic QoL instruments, namely the SF-36 and DLQI, did not capture differences in the underlying health-related QoL burden of AA patients with different AA severity. Such differences were clear when HRQoL was measured for AA patients with mild hair loss AAPPO.

LUTS in Older Adults: Definitions, Comorbidity Impact, Patient Priorities, and Treatment Strategies for Managing Daytime and/or Nighttime Symptoms - ICI-RS 2024.

Lower urinary tract symptoms (LUTS) are prevalent among older adults, a population that faces multiple medical challenges, with frailty being a major concern. Despite the high prevalence of LUTS, current treatment strategies for older adults are often inadequate. This paper aims to address these issues by defining daytime and/or nighttime LUTS and examining the impact of comorbid conditions on these symptoms. We will identify the priorities of older patients regarding LUTS management and propose treatment strategies to improve outcomes in this vulnerable population. This review is based on discussions at the ICI-RS 2024 meeting in Bristol, UK, alongside an extensive literature review examining LUTS in older adults. The review explores distinctions between daytime and nighttime symptoms, the impact of frailty, patient priorities, treatment strategies and the role of comorbidities. LUTS in older adults present a complex and multifaceted challenge, with notable differences between daytime and nighttime manifestations, which may coexist. Clear definitions are needed. There is a lack of evidence that treating associated comorbidities will improve LUTS or urinary incontinence. Personalized care approaches, integrated into broader geriatric health strategies, are essential for addressing these symptoms. An ideal treatment strategy is proposed, focusing on daytime, nighttime or combined day- and nighttime LUTS. Further research is needed to refine treatment pathways and optimize outcomes for this population. A comprehensive, individualized approach is necessary to address LUTS in older adults. Future research should focus on refining diagnostic definitions, exploring the interplay between comorbidities and LUTS, and developing patient-centered treatment strategies that account for both daytime and nighttime (or combined) symptoms.

"None of us asked to be in this community." Understanding nephrotic syndrome through TikTok: patient and caregiver perspectives.

TikTok, a popular social media platform, is increasingly used for health information dissemination; however, the accuracy and quality of medical content remain uncertain, including in the context of nephrotic syndrome (NS). This study aims to identify prominent patient and caregiver experiences with NS on TikTok and demonstrate how they may vary. A convenience sample of TikTok videos containing the hashtag "nephrotic syndrome" posted between July 1, 2020, and February 29, 2024, was analyzed. Videos underwent cyclical and inductive coding, followed by content and discourse analysis to identify common themes and narratives. One hundred twenty-three videos were included in the analysis. 62.6% of videos (N = 77) consisted of caregivers sharing their experiences of their child's disease. Three prominent topics included: (1) navigating healthcare and managing illness, where users shared their disease journeys; (2) emotional and physical wellbeing, where caregivers focused on physical disease signs while patients highlighted the mental health toll of the illness; and (3) education, awareness, and support systems, where users shared feelings of social isolation post-diagnosis. The discourse analysis revealed language portraying patients as "warriors," reflecting the resiliency promoted by TikTok support systems. We uncovered a hidden disease burden associated with NS that affects everyday life, reinforcing the importance of the journey and stress patients and caregivers experience outside of the clinician's office. Our findings also highlight that patient priorities may differ from those reported by caregivers, particularly in pediatrics. TikTok may also be an outlet for feelings of isolation and community-building within NS.

Improving Collaborative Management of Multiple Mental and Physical Health Conditions: A Qualitative Inquiry into Designing Technology-Enabled Services for Eliciting Patients' Values

People with multiple chronic conditions (MCC) face challenges planning health care collaboratively with primary care clinicians, particularly when their priorities conflict. These challenges intensify with symptoms of anxiety or depression. Elicitation of patients' values is promoted as a means to aligning patient and clinician priorities in primary care, and as a component of psychotherapy for anxiety and depression. But, these approaches remain siloed. We conducted a qualitative interview study to understand patients' preferences for Technology Enabled Services (TESs) to coordinate values elicitation across primary and mental health care settings. Many participants preferred face-to-face elicitation by a mental health clinician; some preferred elicitation via telehealth and some preferred self-directed elicitation. Participants' preferences were influenced by: 1) how they perceived the rationale and benefits of values elicitation; 2) how they perceived the training and credibility of people facilitating elicitation; and 3) how they perceived their own capacity to engage in values elicitation. Participants also shared numerous concerns about values elicitation that warrant critical examination of TESs to support it.

Evaluating the Importance of Return to Sports and Hamstring Strength in a Discrete Choice Experiment for Anterior Cruciate Ligament Injury.

With emerging treatments for anterior cruciate ligament (ACL) injury, analysis of patient preferences is lacking to align clinical care and research with patient priorities. To identify patient priorities for outcomes after surgical intervention if they were to sustain an ACL tear, analyze what outcome measures influenced preferences, and determine whether patient demographics influenced preferences. Cross-sectional study. The authors screened patients aged 18 to 30 years who presented for upper extremity complaints to a single institution in 2023. Patients were excluded for current lower extremity injury or history of a knee injury requiring surgical consultation. The authors designed a discrete choice experiment through literature review of outcome measures for bridge-enhanced ACL restoration (BEAR) and ACL reconstruction (ACLR) with hamstring tendon autograft. Measures included return to sports, risk of arthritis, risk of reinjury, and hamstring strength. Patients chose surgery A (ACLR with hamstring tendon autograft) or surgery B (BEAR) and then rated the importance of each outcome measure on their selection. In total, 100 participants (36 female; mean age, 25.1 ± 4.0 years) completed the discrete choice experiment. Overall, 56.0% participated in sports and 80.0% were employed. Based on surgery choice group, there were no significant differences in sex, age, Marx Activity Scale score, sports participation, or employment status between patients who selected BEAR or ACLR with hamstring tendon autograft (all P > .361). Return to sports and hamstring strength were significant priorities for patients in procedure selection (P ≤ .011). Of the patients who selected ACLR with hamstring tendon autograft, 31.6% would not elect to undergo this procedure. In this discrete choice experiment of adults without prior ACL injury, return to sports and hamstring strength were identified as patient priorities when selecting a procedure for ACL injury. Risk of reinjury, however, was not a significant factor in procedure selection. Importantly, these priorities were maintained regardless of patient characteristics, activity level, or employment status.

Theoretically informed codesign of a tailored intervention to support pressure ulcer prevention behaviours by older people living in their own homes in the UK and their lay carers: an intervention codesign study (C-PrUP)

ObjectiveTo codesign a theoretically underpinned, healthcare practitioner-mediated, tailored intervention to support housebound older patients and their lay carers to adopt pressure ulcer prevention behaviours.DesignTheoretical domains framework informed codesign.SettingOne geographical area...

Patient-reported and Clinical Outcomes following Gender-affirming Chest Surgery: A Comparison of Binary and Nonbinary Transmasculine Individuals.

Nonbinary individuals assigned female at birth are increasingly presenting for gender-affirming chest surgery (GCS). However, little is known about psychosocial outcomes in this group. We compare patient-reported and clinical outcomes after GCS between nonbinary and binary transmasculine individuals who underwent GCS. We performed an institutional retrospective chart review. Demographic information, medical comorbidities, history of gender-affirming medical care, operative details, and complications were collected and compared between nonbinary and binary patients. Two validated patient-reported outcomes measures, the Gender Congruence and Life Satisfaction (GCLS) scale and the chest dysphoria measure were administered postoperatively. A total of 281 patients were included, of which 40.6% (114) identified as nonbinary and 59.4% (167) identified as binary transgender men. Fewer nonbinary patients used testosterone (P < 0.001). Nonbinary patients underwent a wider variety of masculinizing chest operations than binary patients, with fewer nonbinary patients electing for free nipple-areolar complex grafts (P < 0.001) and more nonbinary patients undergoing breast reduction (P = 0.001). A total of 137 (48.7%) patients responded to postoperative surveys. Nonbinary and binary respondents had comparable scores on the overall GCLS (P = 0.86), GCLS chest subscale (P = 0.38), and chest dysphoria measure (P = 0.40). The absence of nipple-areolar complex grafts was associated with higher GCLS chest scores (P = 0.004). Nonbinary individuals have similarly positive outcomes following GCS compared with binary individuals. Surgeons should be aware of greater medical and surgical heterogeneity in this population and seek to understand individual patients' goals and priorities.

Pregnancy care experiences for adults with congenital heart disease in the United States

BackgroundResearch to reduce maternal morbidity due to cardiovascular disease is vitally important in the United States, especially for the growing number of individuals with congenital heart disease (CHD) reaching childbearing age. Understanding patient experiences through patient engagement is critical to designing research that is aligned with the needs of adults with CHD undergoing pregnancy. MethodsThis patient engagement project, grounded in human centered design, focuses on the discovering patient and healthcare provider priorities for reducing maternal morbidity in CHD through patient centered outcomes research (PCOR). In this first stage, a capacity building consortium of over 90 key partners, including patients, advocates, healthcare providers, and researchers, was assembled. Baseline education on patient engagement, PCOR, and survey instrument design was delivered virtually. Two questionnaires were designed to elicit tacit knowledge – one for patients and one for providers – regarding gaps and needs across four key pillars: access to clinical care, patient and provider education, mental health, and research opportunities. The pillars were determined through thematic summaries from consortium discussions. ResultsThe patient questionnaire received 828 responses (age range: 18-60 years) from 48 U.S. states. The provider questionnaire garnered 218 responses from professionals. Several common themes for areas of research were observed across all pillars including improved access to specialized cardio-obstetric care and improved education about the need for specialized care. Healthcare providers cited insufficient care coordination models and resources as a major barrier to providing effective clinical care. Both patients and providers expressed a need for improved access to mental health care. While only 28% of patient respondents who underwent a pregnancy reported a pre-existing mental health diagnosis, nearly 2/3 reported having significant anxiety symptoms related to their pregnancy. Of those with significant symptoms, 44% were unable to access mental health services. Additionally, only 55% of healthcare providers reported referral for assessment and treatment if mental health concerns arose during or after pregnancy. ConclusionThe results provide valuable insights into the unique challenges faced by patients with CHD and their providers during pregnancy. By addressing the identified gaps through PCOR, we can work towards a goal to improve maternal care for women with CHD.

Deep caries and pulp exposures management preferences in permanent teeth: A survey amongst Spanish dentists.

To assess Spanish dentists' management preferences for deep caries removal and exposed pulps in permanent teeth. A web-based open and anonymous survey was distributed by social media and a specific website for this project amongst dentists practicing in Spain. The questionnaire comprised 40 questions, divided into five sections: (1) demographic data and professional activity; (2) carious tissue removal; (3) decision-making regarding pulp exposure; (4) direct pulp capping and (5) pulpotomy procedures in permanent teeth. Results were descriptively analysed. Logistic regression (95% CI) analyses and X2 tests were carried out. A total of 538 responses were received. Half the respondents (53.7%) preferred to perform complete caries excavation for shallow and moderate carious dentin lesions, and selective excavation to firm dentin for deep lesions (57.8%). Selective removal to soft dentin and stepwise removal were much less indicated (15.4% and 10.9%, respectively). Exposed pulps in asymptomatic teeth were treated by direct pulp capping (over 80%), decreasing in the presence of reversible pulpitis symptoms (57.1%). If irreversible pulpitis was diagnosed, a pulpectomy would be performed by 53.5% and 89.9% of the respondents in, respectively, immature and mature teeth. Pulpotomy was performed routinely only by 26.4% of the clinicians. Patients' attitudes and priorities were the most relevant criteria when performing direct pulp capping and pulpotomy, together with the history of pain and the presence of bleeding. Regarding the clinical procedure, dry cotton was preferred to obtain haemostasis and Biodentine was the material of election. Caries removal preferences and management of pulp exposure by dentists practicing in Spain deviated from vital pulp treatment guidelines, mainly regarding indications and case selection. Pulp exposure was managed by direct pulp capping in asymptomatic cases, whilst immature permanent molars favoured the indication of pulpotomy when pulpitis was diagnosed. Most clinicians used hydraulic calcium silicate cement, specifically Biodentine, to perform vital pulp treatments. Postgraduate formation and continuing education in caries lesions management and vital pulp treatments were consistently related to more conservative and updated decisions.

Personalised care for hyperlipidaemia by tailoring shared decision-making toward patient priorities &amp; 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&amp;gt;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&amp;lt;0.001 (Figure 1B). Furthermore, this trend persisted after follow-up; p&amp;lt;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.

Basic concepts in preserving holistic well-being in interstitial lung diseases: A MIHRA and G-FoRSS collaborative summary

Background: Interstitial lung diseases (ILD) are a heterogenous group of diseases that involve inflammation and/or fibrosis of the lung parenchyma. ILD can exert significant stress on a person’s extrapulmonary systems, eroding organ and physical function. Thus, ILD can accelerate age-related vulnerabilities that lead to early onset frailty, which makes frailty prevalent in ILD at any age. Frailty confers a three-fold increase of, and predicts, mortality in ILD. Objective: To present a feasible approach to understanding and addressing holistic health in ILD to fortify physical and psychological capacity markedly enhances a person’s tolerance of ILD and aging. Methods: From our previous published work that consisted of serial Medline and PubMed scoping reviews (with search terms such as frailty, interstitial lung disease, ILD, idiopathic pulmonary fibrosis, IPF, systemic sclerosis, sarcoidosis, well-being), patient focus groups, ILD outcome measures deconstruction and linking to the World Health Organization’s International Classification of Disability, and nominal group processes, we iteratively isolated factors that seem to accelerate and, importantly, protect against and reverse frailty. These factors were presented at The Eastern Pulmonary Conference in September 2024 and summarized herein. Results: The result is a collective statement that (a) summarizes health-care system responsibilities in providing sustainable, humane environments for patients and clinicians; (b) advocates for early intervention and shared decision-making from the time of diagnosis to fortify well-being when living with ILD; and (c) offers guidance to fortify physical, mental, and social well-being as well as health literacy and strength of patient voice. Conclusion: Proactive measures to protect against frailty begins at the time of diagnosis. Interventions that are incremental and based on patient priorities and preferences introduce a feasible approach to holistic well-being.

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.