Patient Priorities Research Articles

CHALLENGES AND OPPORTUNITIES FOR RECRUITMENT AND RETENTION OF OLDER HISPANICS FOR CLINICAL RESEARCH

Abstract Older Hispanics represented 9% of the population over 65 years of age in the USA in 2019. That number is expected to increase to 21% by 2060. Representation of older Hispanics in clinical research is not proportional to the projected increase of older Hispanics. I will discuss the lessons learned on recruitment and retention of older Hispanics and their family caregivers from a large multi-site pragmatic clinical trial I am a part of and a small pilot project I am co-leading. The pragmatic trial compares a health-system-based approach and a community-based approach to dementia care. For this pragmatic trial, 2,176 dyads of persons living with dementia and their family caregivers were recruited. More than 20% of participating dyads belong to underrepresented racial and ethnic groups and 8.8% identified as Hispanic. The pilot project tests the cultural adaptation of the Patient Priorities Care (PPC) approach for older Hispanics. For the pilot project, we recruited 5 older Hispanics with multiple chronic conditions (MCC) and 20 Hispanics with MCC and dementia. I will describe the recruitment strategies used in each study, the barriers we faced, and the approaches we think worked best for the recruitment of Hispanics. I will also reflect on the challenges we currently face to conduct pragmatic trials that include older Hispanics and the opportunities for improvement.

PERSONS LIVING WITH DEMENTIA AND MULTIPLE CHRONIC CONDITIONS IDENTIFYING HEALTH PRIORITIES WITH CARE PARTNERS

Abstract Many older persons living with dementia (PLWD) also live with multiple chronic conditions (MCCs). Care partners of PLWD will increasingly need to make care decisions for PLWD, but the health care priorities of PLWD with MCCs may vary. The Patient Priorities Care Health Priorities Identification Process is an evidenced-based tool to support older adults with MCCs to identify and communicate their health priorities. In this pilot study, we adapted this tool to engage care partners of PLWD as active listeners while the PLWD discussed their healthcare goals and priorities. We recruited dyads consisting of a care partner and a care recipient in the early stages of dementia. We assessed feasibility and acceptability of going through the process together through open-ended questions. Two coders used thematic analysis to examine their responses. Five dyads (N=10) participated in the pilot study. The PLWD ranged in age from 70-83 years and had a range of three to eight chronic conditions. Care partners ranged from 39-78 years of age. The PLWD had no issues completing the process with their care partners present and enjoyed having their care partner present. Care partners valued engaging as active listeners and had a better understanding of the PLWD’s health care priorities. Engagement in this process also helped them recognize that the PLWD is proactive in their own health goals. Involving care partners in a healthcare priorities identification process is a valuable, feasible, and acceptable way to prepare care partners to be care proxies.

OLDER ADULTS WITH MULTIPLE CHRONIC CONDITIONS FROM VULNERABLE POPULATIONS: THE SUCCESS OF PATIENT PRIORITIES CARE

Abstract As older adults in the USA grow more diverse, equitable translation of knowledge and best practices to vulnerable groups is essential. Older adults with multiple chronic conditions (MCC) benefit from care focused on the health priorities of individuals. Health priorities include: 1) core values that provide meaning to life; 2) specific, actionable, and realistic health goals that reflect these values; and 3) care preferences that include what individuals are able and willing to do (or not) to achieve their goals. For vulnerable older adults, adverse life experiences provide context to their values. A diverse panel will review the Patient Priorities Care (PPC) approach and describe how PPC has been successfully adapted at different institutions. The first presentation will describe PPC and the importance of identifying values, goals, and health preferences for older adults with MCC. The presenter will show that PPC improves outcomes among older adults, their families, and healthcare providers. The second presentation will describe the implementation of PPC in the VA system. The presenter will describe the impact of PPC and efforts to disseminate it. The third and fourth presentations will describe the cultural adaptation of PPC for older African Americans and older Hispanics respectively. The presenters will describe the adaptation process and discuss the barriers they faced, and the lessons learned from each population group. The panel will conclude by providing suggestions on how to disseminate and increase the adoption of PPC to identify what matters most for diverse older adults.

Clinical phenotype of FOXP1 syndrome: parent-reported medical signs and symptoms in 40 individuals

BackgroundThe first studies on patients with forkhead-box protein P1 (FOXP1) syndrome reported associated global neurodevelopmental delay, autism symptomatology, dysmorphic features and cardiac and urogenital malformations. The aim of this study...

Triage Accuracy in Pediatrics Using the Emergency Severity Index

IntroductionAlthough the Emergency Severity Index is the most widely used tool in the United States to prioritize care for patients who seek emergency care, including children, there are significant deficiencies in the tool’s performance. Inaccurate triage has been associated with delayed treatment, unnecessary diagnostic testing, and bias in clinical care. We evaluated the accuracy of the Emergency Severity Index to stratify patient priority based on predicted resource utilization in pediatric emergency department patients and identified covariates influencing performance. MethodsThis cross-sectional, retrospective study used a data platform that links clinical and research data sets from a single freestanding pediatric hospital in the United States. Chi-square analysis was used to describes rates of over- and undertriage. Mixed effects ordinal logistic regression identified associations between Emergency Severity Index categories assigned at triage and key emergency department resources using discrete data elements and natural language processing of text notes. ResultsWe analyzed 304,422 emergency department visits by 153,984 unique individuals in the final analysis; 80% of visits were triaged as lower acuity Emergency Severity Index levels 3 to 5, with the most common level being Emergency Severity Index 4 (43%). Emergency department visits scored Emergency Severity Index levels 3 and 4 were triaged accurately 46% and 38%, respectively. We noted racial differences in overall triage accuracy. DiscussionAlthough the plurality of patients was scored as Emergency Severity Index 4, 50% were mistriaged, and there were disparities based on race indicating Emergency Severity Index mistriages pediatric patients. Further study is needed to elucidate the application of the Emergency Severity Indices in pediatrics using a multicenter emergency department population with diverse clinical and demographic characteristics.

#HowNotToDoPatientEngagement: the engaging with purpose patient engagement framework based on a twitter analysis of community perspectives on patient engagement

BackgroundEvaluation of patient engagement practices are frequently researcher-driven, researcher-funded, and asymmetric in power dynamics. Little to no literature on patient experiences in patient engagement exist that is are not framed by institutionally-driven research inquiries (i.e., from the lens of a research team lead, or healthcare administrative setting). Understanding these perspectives can help us understand: (i)what matters to patients when they are engaged in research; (ii)why it matters to them, and(iii) how to improve patient engagement practices, so that the needs and priorities of patients are consistently met.MethodsThis is a patient partner-initiated study. Study authors (including patient partners) conducted a conventional and summative content analysis of textual data retrieved from a highly engaged conversation on Twitter regarding the hashtags #HowNotToDoPatientEngagement and #HowToDoPatientEngagement posted between February 2018 to June 2021. Twitter is a microblogging platform that allows for free-flowing discussions between users not pre-bound by specific community groupings (like within that of Facebook).ResultsA total of 276 tweets were retrieved from 178 separate contributors across seven geographical locations. Four stakeholder groups were identified. We generated 24 codes, nine subthemes and five overarching themes: respect, support, collaboration, inclusivity and impact. Four of these themes are closely aligned with the Strategy for Patient Oriented (SPOR) Patient Engagement framework. We identify impact as a separate and new theme.InterpretationBased on our findings we offer the Engaging with Purpose Patient Engagement Framework that defines and describes respect, support, collaboration, inclusivity and impact as five key pillars of meaningful patient engagement.

Patient Priorities, Decisional Comfort, and Satisfaction with Metformin versus Insulin for the Treatment of Gestational Diabetes Mellitus.

We compared patient priorities, decisional comfort, and satisfaction with treating gestational diabetes mellitus (GDM) with metformin versus insulin among pregnant individuals with GDM requiring pharmacotherapy. We conducted a cross-sectional study of patients' perspectives about GDM pharmacotherapy in an integrated prenatal and diabetes care program from October 19, 2022, to August 24, 2023. The exposure was metformin versus insulin as the initial medication decision. Outcomes included standardized measures of patient priorities, decisional comfort, and satisfaction about their medication decision. Among 144 assessed individuals, 60.4% were prescribed metformin and 39.6% were prescribed insulin. Minoritized individuals were more likely to receive metformin compared with non-Hispanic White individuals (34.9 vs. 17.5%; p = 0.03). Individuals who were willing to participate in a GDM pharmacotherapy clinical trial were more likely to receive insulin than those who were unwilling (30.4 vs. 19.5%; p = 0.02). Individuals receiving metformin were more likely to report prioritizing avoiding injections (62.4 vs. 19.3%; adjusted odds ratio [aOR]: 2.83; 95% confidence interval [CI]: 1.10-7.31), wanting to take a medication no more than twice daily (56.0 vs. 30.4%; aOR: 3.67; 95% CI: 1.56-8.67), and believing that both medications can equally prevent adverse pregnancy outcomes (70.9 vs. 52.6%; aOR: 2.67; 95% CI: 1.19-6.03). Conversely, they were less likely to report prioritizing a medication that crosses the placenta (39.1 vs. 82.5%; aOR: 0.09; 95% CI: 0.03-0.25) and needing supplemental insulin to achieve glycemic control (21.2 vs. 47.4%; aOR: 0.36; 95% CI: 0.15-0.90). Individuals reported similarly high (mean score > 80%) levels of decisional comfort, personal satisfaction with medication decision-making, and satisfaction about their conversation with their provider about their medication decision with metformin and insulin (p ≥ 0.05 for all). Individuals with GDM requiring pharmacotherapy reported high levels of decision comfort and satisfaction with both metformin and insulin, although they expressed different priorities in medication decision-making. These results can inform future patient-centered GDM treatment strategies. · Pregnant individuals with GDM requiring pharmacotherapy expressed a high level of decisional comfort and satisfaction with medication decision making.. · Individuals placed different priorities on deciding to take metformin versus insulin.. · These results can inform interventions aimed at delivering person-centered diabetes care in pregnancy that integrates patient autonomy and knowledge about treatment options..

OP87 A Roadmap for Increasing The Usefulness And Impact Of Patient Preference Studies In Health Technology Assessment (HTA)

IntroductionThe number of patient preference studies in health has increased dramatically. There is growing use of patient preferences in a wide variety of contexts, including health technology assessment. Patient preference studies can help inform decision makers on the needs and priorities of patients and the tradeoffs they are willing to make about health technologies.MethodsThis International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Task Force included international experts, health preference researchers and others from diverse backgrounds, including regulatory, health technology assessment, medicine, patient advocacy, and the pharmaceutical industry. The report underwent two rounds of written reviews by ISPOR Preferences Special Interest Group members until a final consensus was reached. The Task Force focused on developing a roadmap that would: (i) apply to the wide variety of preference methods, (ii) identify key domains to guide researchers and other stakeholders in making patient preference studies more useful to decision makers, and (iii) detail important questions to guide researchers conducting preference studies and those critically appraising them.ResultsThis Task Force report provides a novel roadmap that invites patient-preference researchers to work with decision makers, patients and other stakeholders to do even more to ensure that studies are useful and impactful. The ISPOR Roadmap consists of five key elements: (i) Context; (ii) Purpose; (iii) Population; (iv) Method; and (v) Impact. In this report, we define these five elements and provide good practices on how patient-preference researchers can actively contribute to increasing the usefulness and impact of patient preference studies in decision-making. We also present a set of key questions that can support researchers and other stakeholders in assessing efforts that promote preference studies’ intended and unintended impact.ConclusionsThis roadmap can help increase the usefulness and impact of patient preference studies in decision-making by challenging researchers to engage and partner with decision makers, patients and others, and together consider the intended and unintended impacts of patient preference studies on decision-making while actively fostering positive impact.

Safe, Social, and Engaged: Clinician perspectives on good institution‐free days for people with dementia

AbstractBackgroundComposite measures of survival and residence, such as institution‐free days (IFDs), encompass many patient and family priorities and are readily measured using payer claims or electronic health record data. However, knowledge gaps limit their application to studies of people with dementia (PWD). First, PWD, family care partners, and clinician perspectives on survival‐residence composite outcomes are unknown. Second, approaches to measuring IFDs consider all institution days equally poor and all home days equally well, which may be inconsistent with stakeholder assessments.MethodWe conducted a qualitative study to explore stakeholders’ perspectives on what makes a “good day” for a PWD. This included semi‐structured interviews with clinicians who provide care to PWD. Clinicians were also asked for their opinions regarding the use of survival‐residence composite outcomes in dementia research. Interviews were audio‐recorded and professionally transcribed. De‐identified transcripts were reviewed by the research team independently and during weekly consensus meetings to identify relevant themes.ResultThematic saturation was reached after 24 interviews. Nearly half of clinicians also had personal experience as a care partner of a PWD. Participant characteristics are summarized in Table 1. Salient themes were identified and grouped into 2 major categories: (1) attributes of quality of days for PWD, and (2) impressions of survival‐residence composite outcomes (Table 2). Key attributes of quality of days were safety, socialization and engagement, and neuropsychiatric distress. These qualities were more important in defining “home” than type of residence (Figure). Clinicians appreciated that a survival‐residence composite outcome, such as IFDs, could capture the important aspects of “aging in place” and avoiding burdensome hospitalizations. They also noted a desire for such a measure to capture the quality of those days. Concerns were raised over how differential access to home‐based services due to socioeconomic factors would influence patient accrual of IFDs and whether such a measure might also increase existing stigma around institutions.ConclusionFuture work will integrate these findings with the perspectives of PWD and their family care partners as well as further explore the relative values of these attributes of a survival‐residence composite outcome for studies of patients with ADRD.

The use of constant observation for people with dementia in hospitals: a systematic review

AbstractBackgroundConstant observation is a model of care used in hospitals to manage a patient’s safety. For people with dementia this is often due to a risk of falling or from displaying behaviours considered to carry a risk of harm. Person‐centred approaches are recognised as best practice for people with dementia, but this can be difficult to achieve for staff providing constant observation in hospital settings. It is therefore important to understand how person‐centred principles can underpin the use constant observation.MethodA mixed‐methods systematic review was conducted to understand how and why constant observation is used for people with dementia in hospital, how effectiveness is measured and what enables staff to use a person‐centred approach.Electronic databases (Medline (PubMed), CINHAL, Psychinfo, and The Cochrane Library) were searched between 2010 – 2022. Screening and data extraction were completed against eligibility criteria, with 20% double screened and extracted for consistency. Narrative synthesis combined qualitative and quantitative findings.ResultTwenty‐four studies were included, reporting findings from 14 intervention studies and ten studies of constant observation practices. Constant observation for people with dementia was often provided by non‐registered staff without specific training for the role. Assessments and processes for assigning constant observation helped clarify the level of observation required and encouraged regular review that linked initiation and discontinuation to a patient’s changing needs. Examples of person‐centred care were mainly derived from studies of volunteers or staff employed to provide activities. These demonstrated that meaningful engagement could reassure a person and improve their mood. Proactive approaches that anticipated a person’s distress were thought to reduce behaviours that carried a risk of harm but supporting evidence was lacking.ConclusionA proactive, person‐centred approach to constant observation is accepted as beneficial for people living with dementia. The reliance on non‐registered staff limited by organisational efforts to reduce risk leads to responses focused on containment. When staff are trained and supported during constant observation, they can connect with patients and provide comfort, potentially reducing behaviours that carry a risk of harm. Aligning patient, staff and organisational priorities will likely improve the inpatient experience of people living with dementia.

Learning From Clinical Supervisor Practice Variability: Exploring Medical Resident and Fellow Experiences and Interpretations.

Clinical practice variability is characterized by 2 or more clinicians making different treatment decisions despite encountering a similar case. This study explores how medical residents and fellows experience and interpret intersupervisor clinical practice variability and how these variations influence learning. Seventeen senior residents or fellows in internal medicine, hematology, or thrombosis medicine (postgraduate year 3 or above) participated in semistructured interviews after a clinical rotation in thrombosis medicine from December 2019 to March 2021. Data collection and analysis occurred iteratively and concurrently in a manner consistent with constructivist grounded theory. Variation theory was used to guide the development of some interview questions. A central tenet of this theory is that learning occurs by experiencing 3 sequential patterns of variation: contrast, generalization, and fusion. Participants were recruited purposively with respect to specialty until theoretical sufficiency was reached. Clinical practice variability was experienced by all participants. Residents and fellows attributed practice variability to intrinsic differences among supervisors; interinstitutional differences; selection and interpretation of evidence; patient preferences, priorities, and fears; and their own participation in the decision-making process. Clinical practice variability helped residents and fellows discern key features of cases that influenced decision-making (contrast), group similar cases so that the appropriate evidence could be applied (generalization), and develop attitudes consistent with providing individualized patient care (fusion). Observing practice variability was more helpful for fifth- and sixth-year residents and less helpful for third- and fourth-year residents. Clinical practice variability helped residents and fellows discern critical aspects, group similar patients, and practice individualized medicine. Future research should characterize how clinical practice variability influences learning across the spectrum of training, how supervisors could encourage learning from practice variability, and how curricula could be modified to allow learners greater opportunity to reflect on and consolidate the practice differences they observe.

Experiences and perspectives of healthcare professionals, patients and caregivers toward the serious illness conversation guide: protocol for a qualitative meta-synthesis

IntroductionExploring the experiences and perspectives of healthcare professionals, patients and caregivers toward serious illness conversations based on the Serious Illness Care Program is vital for improving communication with patients who...

Implementation and the effects of a Parkinson Network Therapy (PaNTher) on activities of daily living and health-related quality of life in Parkinson’s disease patients: study protocol of an mixed-method observational cohort study in outpatient care

IntroductionParkinson’s disease (PD) represents the fastest growing neurodegenerative disease with an increasing prevalence worldwide. It is characterised by complex motor and non-motor symptoms that lead to considerable disability. Specialised physiotherapy...

OGC P20 A Systematic Mapping Review of Core Outcome Reporting in Surgical Research for Oesophageal Cancer

Abstract Background The UK has one of the highest rates of oesophageal adenocarcinoma worldwide. Surgical resection, with peri-operative chemotherapy, is the cornerstone of curative treatment. The evidence base for which surgical approach is best (including open, hybrid, totally laparoscopic/thoracoscopic, and robotic surgery) is negatively affected by heterogeneous reporting of outcomes. This study examines the degree to which outcomes deemed critically important to patients and healthcare professionals (a core outcome set - COS) are reported by studies in this field. Methods We undertook a mapping review of prospective cohort studies, randomized controlled trials (RCTs), and published protocols in the field of oesophageal cancer surgery. Evidence Based Medicine Reviews, MEDLINE, EMBASE, and CINAHL were searched for relevant studies conducted over a 10-year period (2011-2021). We mapped the reporting of 10 core outcomes during this period as described by a COS for oesophagectomy trials (overall survival; in-hospital mortality; inoperability; the need for additional intervention; respiratory complications; conduit necrosis and anastomotic leak; severe nutritional problems; the ability to eat and drink; problems with acid indigestion or heartburn and overall quality of life). Results Initial searches identified 8944 potentially eligible records, which, after exclusion of duplicates, abstract screening and full paper reviews, yielded 57 eligible studies that recruited 10,561 patients (36 prospective cohort studies, 16 RCT’s and 5 published protocols). No study reported all core outcomes. The median number of outcomes reported was 4 (IQR 3). ‘In-hospital mortality’ (86%), ‘conduit necrosis/leak’ (81%) and ‘respiratory complications’ (79%) were reported by most studies. ‘Quality of life’ (26%), reflux symptoms’ (21%) and 'severe nutritional effects' (19%) were rarely reported alongside ‘need for reintervention’ (16%). No improvement in reporting rates was seen during the study period. Conclusions The reporting of core outcomes in surgical research for oesophageal cancer does not adequately reflect the priorities of patients and healthcare professionals. Further work is therefore needed to significantly improve the reporting of these core outcomes and increase the methodological quality of studies in this field. The results from this study suggest that there is a need for further high-quality prospective studies and RCTs which encompass the reporting of core outcomes.

Patient-Centered Quality Measures for Dialysis Care: A Report of a Kidney Disease Outcomes Quality Initiative (KDOQI) Scientific Workshop Sponsored by the National Kidney Foundation

Providing high-quality patient-centered care is the central mission of dialysis facilities. Assessing quality and patient-centeredness of dialysis care is necessary for continuous dialysis facility improvement. Based predominantly on readily measured items, current quality measures in dialysis care emphasize biochemical and utilization outcomes, with very few patient-reported items. Additionally, current metrics often do not account for patient preferences and may compromise patient-centered care by limiting the ability of providers to individualize care targets, such as dialysis adequacy, based on patient priorities rather than a fixed numerical target. Developing, implementing, and maintaining a quality program using readily quantifiable data while also allowing for individualization of care targets that emphasize the goals of patients and their care partners provided the motivation for a September 2022 Kidney Disease Outcomes Quality Initiative (KDOQI) Workshop on Patient-Centered Quality Measures for Dialysis Care. Workshop participants focused on 4 questions: (1) What are the outcomes that are most important to patients and their care partners? (2) How can social determinants of health be accounted for in quality measures? (3) How can individualized care be effectively addressed in population-level quality programs? (4) What are the optimal means for collecting valid and robust patient-reported outcome data? Workshop participants identified numerous gaps within the current quality system and favored a conceptually broader, but not larger, quality system that stresses highly meaningful and adaptive measures that incorporate patient-centered principles, individual life goals, and social risk factors. Workshop participants also identified a need for new, low-burden tools to assess patient goals and priorities.

The Short- and Long-Term Outcome Priorities of a Western Australian Adult Burn Population.

To optimize patient recovery, understanding which outcomes are most important to burn patients is key. However, research to determine what outcomes are patient priorities is limited. Therefore, we assessed what outcomes are most important to Western Australian burn patients, separately in the short-term (<6 months) and long-term (6-24 months) after injury. Adult patients who had a burn injury 3-36 months ago completed a survey, rating the importance of 36 short- and long-term outcomes. The survey items were ranked according to the number of patients reporting the outcome as "very important." Results were compared between subgroups based on age, gender, burn size, and number of surgeries. Ninety-three patients were included. In the short-term, "not having a wound infection" (87.1%), "good wound healing" (83.9%), and "walking or moving around" (74.7%) were the most important outcomes. "Lifting or moving something" (67.6%), "walking or moving around" (66.2%), and "being independent" (66.2%) were reported as most important in the long-term. Scar-related outcomes were more important to females and to patients with multiple surgeries; mental health outcomes were priorities for females and patients with major burns; walking and moving around to males and older patients; and social and financial outcomes were rated highly by patients with major burns and multiple surgeries. In conclusion, the most important outcomes were consistent across time periods, indicating the importance of core outcomes in longitudinal follow-up. The wide range of priority outcomes and differences between subgroups underlines the need for multidisciplinary care and a patient-centered approach to support patients.

Role of behavioural abstraction (vs concrete) levels in accepting health technologies

Purpose While attempting to persuade surgeons to accept their health technology, sales representatives for medical devices face daily challenges in the operating room. Surgeons exhibit cognitive complexity (abstractness vs. concreteness) when accepting any form of health technology. Surgeons choose technologies on behalf of their patients, taking patient priorities and expectations into account. Prior research has focused on cognitive complexity in the context of health technology adoption, but the issue of technology acceptance has not been addressed. The purpose of this study to use the construal level (CL) theory to determine the role of behavioural abstraction levels in the acceptance of surgical health technology. Design/methodology/approach On the basis of 556 min of seminar-based data and semi-directive interviews, the surgeons’ experiences regarding the acceptance of health technology were analysed. A non-directive observational method was used to permit the spontaneous emergence of CL dimensions in a natural environment. A categorization model was used for data coding, and MAXQDA, in addition to traditional multidimensional scaling and hierarchical cluster analysis, was used to generate results with joint displays. Findings Effort expectancy, learning curve, performance risk, habit, patient clinical condition, clinical outcome expectancy, technology setting and social influence were construed at a low construal level (LCL). On the other hand, patient paying capacity, technology cost, price value, financial risk and patient performance expectation were construed at a high construal level (HCL). The study also reveals duality-based factors which showed proximity to HCL but intersected at LCL, and vice versa. Duality-based factors such as effort expectancy, surgical technique, trust and perceived risk intersected at HCL, whereas performance expectancy, relative advantage, time expectancy, perceived value, physical risk and peer group influence intersected at LCL. Originality/value This is one of the early studies that presented the impact of behavioural abstraction on behavioural intention to accept health technology for surgeries.

Implementation of patient priorities-aligned care in a home-based primary care program

BackgroundOlder adults may be limited in their ability to access care that meets their health goals owing to disease burden, financial instability, and psychosocial barriers. A home-based primary care (HBPC) program established in 2020 within a large family medicine practice uses the Patient Priorities Care (PPC) approach to identify and address patients’ health priorities. When incorporated as part of the HBPC model of care, the PPC approach has the potential to enhance person-centered care for older adults in a way that best supports their health goals. ObjectiveThe objective of this study is to summarize common recommendations for alignment of care with patients’ health outcome goals after implementation of the PPC approach in an HBPC population. MethodsThis retrospective study was exempt from review by an institutional review board. After enrollment in the HBPC program, patients participated in a PPC priorities identification conversation to identify their health outcome goals and care preferences. Through chart review, 2 researchers independently categorized these goals based on the set of values they most reflect: connecting, managing health, enjoying life, and functioning. Aspects of care in place before enrollment in HBPC were considered to determine any adjustments that needed to be made to align care with patients’ identified priorities. ResultsThe most common value associated with patients’ most desired health outcome goal was functioning (n = 33, 66%). For secondary and tertiary health outcome goals, the most common value identified was managing health (secondary, n = 28, 56%; tertiary, n = 22, 44%). Common recommendations made to align care with patients’ identified priorities included stopping potentially harmful medications, starting medications for untreated conditions, starting physical or occupational therapy, and adjusting medications. ConclusionThrough the PPC approach, patients’ values were identified and care was assessed to aid in attainment of individualized health outcome goals and tailor care to What Matters most.

"Care needs to be integrated" Patient and provider perspectives on a cancer shared-care model.

Current early-stage breast and gynecological cancer care models often begin with a referral from a primary care provider (PCP) or gynecologist (OB/Gyn) and end with a patient being transitioned back to the referring provider at the completion of treatment. There is frequently little communication between oncologists and the referring provider during treatment, and this pattern continues after the patient completes their treatment. We convened a diverse Patient Advisory Board (PAB) to identify areas where breast or gynecological cancer patients felt they could benefit from additional support during and after their cancer care. PAB members attended five Zoom meetings and completed four online surveys. Semi-structured interviews were conducted with primary care or OB/Gyn physicians to collect information on current practices. Patients identified multiple areas in which they needed additional support from their PCP. Providers also identified topics on which they could use additional training. However, there was little overlap between patient and provider priority topics. Both patients and providers agreed that there was inadequate communication between the cancer center and PCPs before, during, and after cancer treatment. A shared-care model that emphasizes communication between primary care providers, the oncology care team, and patients is urgently needed. Patients indicated the need for additional support from their PCP on specific topics, and PCPs were interested in continuing their education to better serve their patients with cancer. The importance of consistent communication among all parties during the entire cancer journey was emphasized as a key area for improvement.

Lessons learned from COVID-19: improving breast cancer services from the patient perspective

Abstract Globally, health services for breast cancer (BC) were significantly disrupted due to the coronavirus disease (COVID-19) pandemic (1)and the recovery and adaptation of health services is widely unknown(2). The purpose of this study is to reflect on the health service experiences of women with a diagnosis of BC in Ireland during the pandemic and to propose patient-centered priorities and recommendations to improve BC services moving forward from COVID-19. The study included semi-structured qualitative interviews (n = 28) with women who participated in a related mixed-methods cohort study. Women with a diagnosis of BC within 5 years in Ireland were initially enrolled and women were selected for interviews through stratified purposive sampling to ensure data was available on diverse cases. Interviews took place in early 2023 to reflect on perspectives from the COVID-19 government lockdown. Thematic analysis was conducted using NVivo software. Thematic analysis highlighted three main themes: unmet needs; patient priorities; and recommendations. Women discussed unmet needs such as routine care fall-out, mental well-being, and financial difficulties. Patient priorities included cohesion among multidisciplinary BC care, proper communication with BC health professionals, and self-empowerment in BC care. Lastly, women recommended improvements for the transition from active treatment, support services, and adaptation of telemedicine. “I do think that any patient going through cancer treatments, it's not just breast cancer, any patient ... there needs to be a little bit more support for the aftercare.” The pandemic has impacted BC services considerably, and this impact has accentuated unmet needs for women with BC in Ireland. Considering these unmet needs from varying backgrounds, patient- centred priorities and recommendations were proposed. To conclude, the patient voice should be prioritized when implementing changes for improvement to health services. Key messages • Health systems must learn from the pandemic to improve services and to avoid detrimental impact of future disasters. • The patient voice should be a key stakeholder when implementating health policies.