Patient and Public Involvement to Co-Design How We Understand and Communicate Mortality Risk for Patients Aged 90 and Over Considering Elective Total Hip Replacement (THR)

Patient and Public Involvement to Co-Design How We Understand and Communicate Mortality Risk for Patients Aged 90 and Over Considering Elective Total Hip Replacement (THR) | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Method Article Patient and Public Involvement to Co-Design How We Understand and Communicate Mortality Risk for Patients Aged 90 and Over Considering Elective Total Hip Replacement (THR) Ravi Patel, Ben Woodhouse, Amr Selim, Adele Higginbottom, Krysia Dziedzic, and 8 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8117526/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 14 You are reading this latest preprint version Abstract Background: Patient and Public Involvement and Engagement (PPIE) is integral to ensuring health research remains grounded in patient priorities and lived experience. This is especially critical for underrepresented groups, such as adults aged 90 and over considering elective total hip replacement (THR). This demographic experiences a small but meaningful risk of postoperative mortality, yet conventional numeric risk communication often fails to align with their values, communication preferences, and the existential context of very advanced age. Traditional PPIE methods, like focus groups, may inadvertently exclude this group due to sensory, mobility, or digital barriers. Methods: This PPIE activity engaged eight public contributors with a lived experience aged 90–96 years (including their carers) through semi-structured one-to-one telephone conversations, aligned with the GRIPP2 Short Form and UK Standards for Public Involvement. We detail our approach to building rapport and facilitating nuanced conversations remotely, focusing on three domains: research context, communication preferences, and decision-making. Our methodology was designed to prioritise relationship-building and flexibility to overcome barriers to participation. Results: Inductive analysis identified three central themes: 1. A Pragmatic Conceptualisation of Risk: Participants framed mortality risk as an acceptable "chance you take," shaped by life experience and advanced age. 2. Values-Based Decision-Making: Quality of life outcomes: mobility, independence, and maintaining an optimistic outlook were prioritised over longevity alone. 3. The Imperative for Compassionate Communication: Participants emphasised a need for clear, respectful, and multi-modal communication, while explicitly rejecting ageist or overly clinical language. Contributors unanimously affirmed the importance of this topic, feeling that as an underserved community, their perspectives on mortality were both valuable in decision making and long overdue. Limitations : This PPIE activity involved a small number of contributors and used telephone-only engagement. While this ensured accessibility, it may limit transferability to other contexts. Future work should test alternative formats and include larger, more diverse samples to enhance generalisability to the nonagenarian populations. Nonetheless, the rich feedback insights from this unrepresented group provide a valuable foundation for future work Conclusions: The findings challenge the primacy of numerical risk presentation for this demographic, underscoring that communication must prioritise dignity, optimism, and clarity. Crucially, contributors affirmed that discussing mortality is a necessary part of informed consent, countering assumptions that this topic should be avoided. These insights directly inform more sensitive and relevant research design and clinical communication tools, ensuring they are grounded in the values and priorities of the patients they are meant to serve. Patient and Public Involvement Risk Communication Shared decision-making Total hip replacement Total Hip Arthroplasty Nonagenarian Figures Figure 1 Plain English Summary This project involved talking directly to public contributors with a lived experience aged 90 and over, and their carers, to understand their views on the risk of dying from hip replacement surgery While this operation can greatly improve mobility and quality of life, it carries a small risk of death. It is important that patients and families receive this information in a clear and sensitive way to help them make the right choice. We spoke one-on-one with eight contributors. They told us that: They see the risk of surgery as a normal part of life. Improving their quality of life, by reducing pain and keeping them mobile, is more important than just living longer. Doctors should talk about these risks honestly, respectfully, and using simple words and pictures. The contributors felt they were part of an age group that is often underrepresented and overlooked in healthcare, making their input especially valuable. Their feedback is being used to create better information leaflets and communication guides, ensuring that future patients and their families can have supportive and understandable conversations about surgery. Background Patient and Public Involvement and Engagement (PPIE) has evolved from a supplementary activity to a critical component of contemporary health research, ensuring that studies are relevant, ethical, and reflective of the priorities of those they aim to serve ( 1 , 2 ). In the UK, the National Institute for Health and Care Research (NIHR) standards for public involvement stipulate the importance of inclusive, flexible, and reflective practices, particularly for groups traditionally underrepresented in research ( 3 , 4 ). This is crucial to avoid over-representing the perspectives of those who are more affluent, digitally literate, or physically able to participate in traditional methods like focus groups. Adults aged 90 years and over represent one of the most rapidly growing and often underserved demographics in orthopaedic research. Elective total hip replacement (THR) can offer this group profound improvements in pain, mobility, and quality of life. However, it also carries a small but significant postoperative mortality risk of approximately 2% within 90 days, according to the UK National Joint Registry ( 5 , 6 ). While the statistical risk is known, there is a critical lack of understanding regarding how this risk is perceived, valued, and preferred to be communicated by the patients themselves. Communicating this risk transparently and sensitively is a complex challenge for clinicians, patients, and families alike ( 7 , 8 ). For this underserved community, who felt their age group was frequently overlooked in healthcare planning, the very act of investigating this topic was later identified by participants as being of significant personal and collective value. Conventional risk communication often relies on numerical probabilities (e.g., "a 2 in 100 chance"), which may not be cognitively meaningful or emotionally accessible for very elderly patients ( 9 ). For individuals in their tenth decade of life, mortality is not a distant abstraction but a proximate reality; its communication is imbued with personal, existential, and social meanings that numerical data alone cannot capture. Furthermore, assumptions that very old patients may wish to avoid discussions about mortality can lead to paternalistic communication or the omission of risk information altogether, undermining informed consent and shared decision-making. Traditional PPIE methods, such as sessional focus groups with agendas set by researchers, present significant barriers for this population. These can include hearing loss, fatigue, mobility limitations that prevent travel, and a lack of familiarity with digital meeting platforms. Consequently, their perspectives are often absent from the very research intended to benefit them, perpetuating a cycle of exclusion and potentially misaligned clinical interventions ( 10 , 11 ). We therefore designed this PPIE activity with inclusivity and nuance as its core principles. The primary aim was to co-design, with adults aged 90 and over and their carers, acceptable and effective strategies for understanding and communicating mortality risk associated with elective THR. Rather than seeking a consensus view, we aimed to capture a heterogeneous range of perspectives to ensure that subsequent research materials, questions, and delivery methods are sensitive, inclusive, and grounded in patient-identified priorities and values. PPIE Methods Design and Ethical Framework This work was conducted as a structured PPIE activity to guide research design, in accordance with the UK Standards for Public Involvement ( 3 ) and reported using the GRIPP2 Short Form ( 12 ). Therefore, the objective was to gather insight and guidance to inform a future qualitative study, rather than to generate generalisable findings through formal data analysis. The guide was reviewed by a clinical and PPI advisory panel prior to use. While formal ethical review was not required for this involvement activity, the principles of the Declaration of Helsinki were rigorously upheld. This included obtaining verbal informed consent, ensuring confidentiality, guaranteeing voluntary participation, and providing honoraria in recognition of contributors' time and expertise. Participant Recruitment and Characteristics We purposively recruited eight public contributors with a lived experience aged 90–96 years to capture a range of experiences. The cohort comprised six individuals who had undergone THR after the age of 90 and two carers who supported individuals in this age group. Recruitment was conducted via established clinical networks, including community geriatricians and hospital orthopaedic teams, to identify individuals who might not otherwise engage with research opportunities. This approach allowed us to reach a population often excluded from traditional recruitment channels. Each participant received a £25 voucher as an honorarium. Procedure and Relational Approach Semi-structured one-to-one telephone conversations, lasting approximately 45–60 minutes, were conducted by the lead researcher, an NIHR Academic Clinical Fellow in Trauma and Orthopaedics. Telephone calls were chosen to overcome sensory, mobility, and digital barriers, ensuring inclusivity. The conversations were guided by a flexible discussion framework featuring fifteen open-ended questions, organised into three key domains (Table 1 ). However, the interaction was designed to be more than a simple data extraction exercise. We explicitly adopted a relational approach, informed by models of therapeutic communication that emphasise empathy, unconditional positive regard, and congruence ( 13 ). This involved: Building Rapport: Beginning conversations with informal discussion to put participants at ease and affirm the value of their personal expertise Active Listening: Allowing participants ample time to reflect and respond, acknowledging the emotional weight of the topic. Demonstrating Empathy: Verbally acknowledging the challenges and perspectives shared by contributors. With verbal consent, conversations were audio-recorded solely to ensure the accuracy of the facilitator's contemporaneous notes. All identifiable information was removed during the transcription of these notes to ensure anonymity. Table 1 Aims of PPIE activities and questions asked to PPIE informants Discussion Domain Example Questions Linked PPIE Objective Intended Output / Influence on Project Design Research Context and Importance “What are your thoughts on researching how we discuss surgical risks with patients aged 90+?" "What should researchers prioritise in this work?" To ensure the proposed research reflects issues considered meaningful and relevant by older adults and carers. To explore participants’ perceptions of the value and relevance of studying mortality risk communication, and to identify priorities and expectations for future research. Communication Approaches and Preferences "How would you want a doctor to talk about a small but serious risk like mortality?" "What types of decision aids would be most helpful? (charts, diagrams, online tools)" To co-design acceptable and accessible ways of communicating surgical mortality risk. To identify preferred language, tone, and modes of presentation that promote clarity, dignity, and understanding in patient–clinician discussions. Decision-Making and Practical Application “What information matters most when weighing risks and benefits of surgery?” “How do personal priorities like independence or quality of life affect surgical decisions?” To ensure study questions and materials align with patient and carer values that underpin surgical decision-making. To explore how older adults weigh risks against quality-of-life outcomes, informing the framing of decision-support materials and qualitative study design. Analytical Approach A full thematic analysis was not undertaken, consistent with the reflective nature of a PPIE activity. Instead, the facilitator's detailed notes were reviewed inductively. This process involved repeatedly reading the notes to identify recurring concepts, patterns of phrasing, and particularly salient insights. These elements were then synthesised into three overarching interpretive themes, which are presented below with illustrative verbatim quotations to ensure the contributors' voices remain central. Results Analysis of the discussions revealed three overarching themes that reflected how contributors conceptualised and communicated mortality risk. Theme 1 : A Pragmatic Conceptualisation of Risk Participants did not engage with mortality risk as an abstract statistic but rather as a tangible, and often acceptable, part of life's calculus. Phrases such as, "Oh, well, I know it’s there. Yes, it’s a chance you take," were typical. For some, professional backgrounds informed this view: "I was a nurse for 45 years—there's a risk in most things." A sense of gratitude and acceptance born from advanced age was also evident: "Once you've had your 90 years, you've got to be thankful." This perspective fostered a calm acceptance, with one participant stating, "No, I wasn't worried. I just had every confidence." Importantly, contributors consistently affirmed the value of the research topic itself. As one participant stated, "It’s high time someone asked us," underscoring that as an underserved community, they felt this investigation was both important and long overdue. Theme 2 : Values-Based Decision-Making: Quality of Life over Longevity The decision to undergo surgery was overwhelmingly driven by the pursuit of improved quality of life, not the mere extension of life. Participants explicitly prioritised outcomes such as pain relief ("The chances of the pain going") and functional independence ("Keeping me mobile"). An optimistic outlook was a recurring motif: "I'm an optimist," and "Life's to be lived, isn't it?" This value set was powerfully summarised by one participant who, reflecting on their experience, said, "If I had the choice, I'd go through it again." Theme 3: The Imperative for Compassionate Communication Participants expressed clear preferences for how risk should be communicated. They valued honesty and clarity ("Just tell them the risks and the advantages") but within a context of profound respect. They rejected paternalism, with one contributor emphasising, "You treat them as adults, not silly children," and another affirming, "I think so, because we're still people." In terms of format, a multi-modal approach was favoured, combining simple language ("Words") with visual aids ("Diagrams always help") and short videos. PPIE Impact Statement This activity had direct and substantive impact on the fellowship project, directly addressing the aim of co-designing study materials and informing research delivery: Reframed Research Focus: The findings established that communication tools must prioritise clarity, respect, and optimism over statistical precision, directly shaping the project's primary outcome. Informed Material Development: Insights on language and multi-modal formats (e.g., short videos, diagrams) are being used to redesign patient information leaflets and the creation of a summary infographic (Fig. 1 ). Shaped Subsequent Study Design: The themes and specific concerns raised (e.g., being treated like "silly children") directly informed the interview schedule for the main qualitative study, ensuring it is delivered sensitively. Established Ongoing Involvement: The activity led to the creation of a standing Public Advisory Group of older adults to provide continuous input, with several participants expressing interest in ongoing involvement. Discussion This PPIE activity demonstrates that telephone-based engagement is a highly inclusive and effective method for capturing the nuanced perspectives of adults aged 90 years and over, a group often excluded from digital and in-person research activities. The contributors provided invaluable insights that challenge conventional clinical approaches to risk communication. They reframed surgical mortality risk from a fearful probability to a natural and acceptable aspect of life, contingent on the potential for improved quality of life. A key finding was the participants' affirmation of the research's importance. By explicitly valuing the investigation into mortality communication, they highlighted a critical gap in patient-centred care for their demographic. This reinforces the necessity of PPIE not only for refining research questions but also for validating the social and ethical relevance of a study from the perspective of underserved communities. These findings counter assumptions that very elderly patients may avoid discussions about mortality. Instead, they demand such conversations be conducted with empathy, partnership, and a respect for patient autonomy. The emphasis on compassion and person-centred language over numerical detail has significant implications for both shared decision-making in clinical practice and the design of patient-facing materials. Conclusion This PPIE activity yielded three fundamental insights that directly challenge conventional clinical approaches to risk communication for adults aged 90 and over considering elective surgery. First, participants conceptualised mortality risk not as a frightening statistic, but as a pragmatic and acceptable trade-off for the potential to restore quality of life. Second, their decision-making was driven overwhelmingly by values centred on mobility, independence, and optimism, rather than a desire to extend life at all costs. Third, and most critically, they demanded compassionate communication that is clear, respectful, and multi-modal, firmly rejecting paternalistic language. These findings underscore that for this demographic, effective risk communication is not about avoiding the topic of mortality, but about framing it within a context of honesty, respect, and empowerment. The participants' clear sentiment of being an underrepresented community reinforced the critical need to actively seek and value their perspectives. By prioritising dignity and patient-identified values over numerical precision, clinicians and researchers can better partner with this growing population to support informed, values-congruent healthcare decisions. The strong endorsement from participants confirms that centring the voices of this underserved community is not only methodologically sound but also a moral and practical imperative for developing truly patient-centred care. Declarations Consent to Participate declaration. Each patient voluntarily agree to participate in this PPIE activity. Ethics Approval declaration Ethical approval was not required for this Patient and Public Involvement and Engagement (PPIE) activity. Human Ethics and Consent to Participate declarations This this Patient and Public Involvement and Engagement (PPIE) activity did not require ethics approval from a human research ethics committee. Funding Declaration This PPIE activity was made possible by funding from the Vivensa Foundation Academy Ignition Grant. The grant was awarded to support research focused on understanding and communicating mortality risk for patients aged 90 and over considering elective total hip replacement (THR). Grant Funder/Institute: The Vivensa Foundation Award Reference: 2025-AIF\51 Grant Holder: Ravi Patel Author Contribution Each author made significant contributions either in the conceptualisation or design of the work, or in the acquisition, analysis, or interpretation of data pertinent to the work. Additionally, each author played a vital role in drafting and revising the work. Each author also gave their approval for final manuscript draft. Furthermore, all authors have agreed to be accountable for all facets of the work, ensuring that any questions concerning the accuracy or integrity of any part of the work are thoroughly investigated and resolved. Acknowledgement This study was made possible by funding from the Vivensa Foundation Academy Ignition Grant. The grant supported essential Patient and Public Involvement and Engagement (PPIE) work, which was critical to shaping the research objectives around understanding and communicating mortality risk for nonagenarians considering elective total hip replacement for primary osteoarthritis References Holmes L, Cresswell K, Williams S, Parsons S, Keane A, Wilson C, Islam S, Joseph O, Miah J, Robinson E, Starling B. Innovating public engagement and patient involvement through strategic collaboration and practice. 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09:59:22","extension":"png","order_by":30,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":16955,"visible":true,"origin":"","legend":"","description":"","filename":"Onlinegroupimage1.png","url":"https://assets-eu.researchsquare.com/files/rs-8117526/v1/4659ba942825116d2694d866.png"},{"id":96977964,"identity":"c2f8bbd2-c057-469d-b08f-efee149fcc87","added_by":"auto","created_at":"2025-11-28 08:49:30","extension":"xml","order_by":31,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":56205,"visible":true,"origin":"","legend":"","description":"","filename":"e675c81266f6432d87b47a962fa8b3a01structuring.xml","url":"https://assets-eu.researchsquare.com/files/rs-8117526/v1/5ebbeced668ba58722743393.xml"},{"id":96977965,"identity":"a058ddd5-a7ed-4620-a47d-9641a97027c7","added_by":"auto","created_at":"2025-11-28 08:49:30","extension":"html","order_by":32,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":67067,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-8117526/v1/1c708b17a8e883af06e0b0e6.html"},{"id":96977934,"identity":"a56942df-4c28-4fdd-9bda-9e0406116cdd","added_by":"auto","created_at":"2025-11-28 08:49:30","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":109374,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eInfographic summarising main thematic results obtained from PPIE with key quotes included.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-8117526/v1/65ff454a86d37edfb4914299.png"},{"id":97144807,"identity":"dba601cb-9729-4d14-814f-e93c42e9defb","added_by":"auto","created_at":"2025-12-01 10:12:08","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":766073,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8117526/v1/ad50de5f-adc8-4de7-bee9-2a82069dcd44.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003e\u003cstrong\u003ePatient and Public Involvement to Co-Design How We Understand and Communicate Mortality Risk for Patients Aged 90 and Over Considering Elective Total Hip Replacement (THR)\u003c/strong\u003e\u003c/p\u003e","fulltext":[{"header":"Plain English Summary","content":"\u003cp\u003eThis project involved talking directly to public contributors with a lived experience aged 90 and over, and their carers, to understand their views on the risk of dying from hip replacement surgery While this operation can greatly improve mobility and quality of life, it carries a small risk of death. It is important that patients and families receive this information in a clear and sensitive way to help them make the right choice. We spoke one-on-one with eight contributors. They told us that:\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eThey see the risk of surgery as a normal part of life.\u003c/li\u003e\n \u003cli\u003eImproving their quality of life, by reducing pain and keeping them mobile, is more important than just living longer.\u003c/li\u003e\n \u003cli\u003eDoctors should talk about these risks honestly, respectfully, and using simple words and pictures.\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eThe contributors felt they were part of an age group that is often underrepresented and overlooked in healthcare, making their input especially valuable. Their feedback is being used to create better information leaflets and communication guides, ensuring that future patients and their families can have supportive and understandable conversations about surgery.\u003c/p\u003e"},{"header":"Background","content":"\u003cp\u003ePatient and Public Involvement and Engagement (PPIE) has evolved from a supplementary activity to a critical component of contemporary health research, ensuring that studies are relevant, ethical, and reflective of the priorities of those they aim to serve (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). In the UK, the National Institute for Health and Care Research (NIHR) standards for public involvement stipulate the importance of inclusive, flexible, and reflective practices, particularly for groups traditionally underrepresented in research (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). This is crucial to avoid over-representing the perspectives of those who are more affluent, digitally literate, or physically able to participate in traditional methods like focus groups.\u003c/p\u003e\u003cp\u003eAdults aged 90 years and over represent one of the most rapidly growing and often underserved demographics in orthopaedic research. Elective total hip replacement (THR) can offer this group profound improvements in pain, mobility, and quality of life. However, it also carries a small but significant postoperative mortality risk of approximately 2% within 90 days, according to the UK National Joint Registry (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). While the statistical risk is known, there is a critical lack of understanding regarding \u003cem\u003ehow\u003c/em\u003e this risk is perceived, valued, and preferred to be communicated by the patients themselves. Communicating this risk transparently and sensitively is a complex challenge for clinicians, patients, and families alike (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). For this underserved community, who felt their age group was frequently overlooked in healthcare planning, the very act of investigating this topic was later identified by participants as being of significant personal and collective value.\u003c/p\u003e\u003cp\u003eConventional risk communication often relies on numerical probabilities (e.g., \"a 2 in 100 chance\"), which may not be cognitively meaningful or emotionally accessible for very elderly patients (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). For individuals in their tenth decade of life, mortality is not a distant abstraction but a proximate reality; its communication is imbued with personal, existential, and social meanings that numerical data alone cannot capture. Furthermore, assumptions that very old patients may wish to avoid discussions about mortality can lead to paternalistic communication or the omission of risk information altogether, undermining informed consent and shared decision-making.\u003c/p\u003e\u003cp\u003eTraditional PPIE methods, such as sessional focus groups with agendas set by researchers, present significant barriers for this population. These can include hearing loss, fatigue, mobility limitations that prevent travel, and a lack of familiarity with digital meeting platforms. Consequently, their perspectives are often absent from the very research intended to benefit them, perpetuating a cycle of exclusion and potentially misaligned clinical interventions (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eWe therefore designed this PPIE activity with inclusivity and nuance as its core principles. The primary aim was to co-design, with adults aged 90 and over and their carers, acceptable and effective strategies for understanding and communicating mortality risk associated with elective THR. Rather than seeking a consensus view, we aimed to capture a heterogeneous range of perspectives to ensure that subsequent research materials, questions, and delivery methods are sensitive, inclusive, and grounded in patient-identified priorities and values.\u003c/p\u003e"},{"header":"PPIE Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eDesign and Ethical Framework\u003c/h2\u003e\u003cp\u003eThis work was conducted as a structured PPIE activity to guide research design, in accordance with the UK Standards for Public Involvement (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) and reported using the GRIPP2 Short Form (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). Therefore, the objective was to gather insight and guidance to \u003cem\u003einform\u003c/em\u003e a future qualitative study, rather than to generate generalisable findings through formal data analysis. The guide was reviewed by a clinical and PPI advisory panel prior to use. While formal ethical review was not required for this involvement activity, the principles of the Declaration of Helsinki were rigorously upheld. This included obtaining verbal informed consent, ensuring confidentiality, guaranteeing voluntary participation, and providing honoraria in recognition of contributors' time and expertise.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eParticipant Recruitment and Characteristics\u003c/h3\u003e\n\u003cp\u003eWe purposively recruited eight public contributors with a lived experience aged 90\u0026ndash;96 years to capture a range of experiences. The cohort comprised six individuals who had undergone THR after the age of 90 and two carers who supported individuals in this age group. Recruitment was conducted via established clinical networks, including community geriatricians and hospital orthopaedic teams, to identify individuals who might not otherwise engage with research opportunities. This approach allowed us to reach a population often excluded from traditional recruitment channels. Each participant received a \u0026pound;25 voucher as an honorarium.\u003c/p\u003e\n\u003ch3\u003eProcedure and Relational Approach\u003c/h3\u003e\n\u003cp\u003eSemi-structured one-to-one telephone conversations, lasting approximately 45\u0026ndash;60 minutes, were conducted by the lead researcher, an NIHR Academic Clinical Fellow in Trauma and Orthopaedics. Telephone calls were chosen to overcome sensory, mobility, and digital barriers, ensuring inclusivity.\u003c/p\u003e\u003cp\u003eThe conversations were guided by a flexible discussion framework featuring fifteen open-ended questions, organised into three key domains (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). However, the interaction was designed to be more than a simple data extraction exercise. We explicitly adopted a relational approach, informed by models of therapeutic communication that emphasise empathy, unconditional positive regard, and congruence (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). This involved:\u003c/p\u003e\u003cp\u003e\u003cul\u003e\u003cli\u003e\u003cp\u003eBuilding Rapport: Beginning conversations with informal discussion to put participants at ease and affirm the value of their personal expertise\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003eActive Listening: Allowing participants ample time to reflect and respond, acknowledging the emotional weight of the topic.\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003eDemonstrating Empathy: Verbally acknowledging the challenges and perspectives shared by contributors.\u003c/p\u003e\u003c/li\u003e\u003c/ul\u003e\u003c/p\u003e\u003cp\u003e With verbal consent, conversations were audio-recorded solely to ensure the accuracy of the facilitator's contemporaneous notes. All identifiable information was removed during the transcription of these notes to ensure anonymity.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003e\u003cem\u003eAims of PPIE activities and questions asked to PPIE informants\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"4\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eDiscussion Domain\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eExample Questions\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eLinked PPIE Objective\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003eIntended Output / Influence on Project Design\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eResearch Context and Importance\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;What are your thoughts on researching how we discuss surgical risks with patients aged 90+?\"\u003c/p\u003e\u003cp\u003e\"What should researchers prioritise in this work?\"\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eTo ensure the proposed research reflects issues considered meaningful and relevant by older adults and carers.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eTo explore participants\u0026rsquo; perceptions of the value and relevance of studying mortality risk communication, and to identify priorities and expectations for future research.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCommunication Approaches and Preferences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\"How would you want a doctor to talk about a small but serious risk like mortality?\"\u003c/p\u003e\u003cp\u003e\"What types of decision aids would be most helpful? (charts, diagrams, online tools)\"\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eTo co-design acceptable and accessible ways of communicating surgical mortality risk.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eTo identify preferred language, tone, and modes of presentation that promote clarity, dignity, and understanding in patient\u0026ndash;clinician discussions.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eDecision-Making and Practical Application\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;What information matters most when weighing risks and benefits of surgery?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;How do personal priorities like independence or quality of life affect surgical decisions?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eTo ensure study questions and materials align with patient and carer values that underpin surgical decision-making.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eTo explore how older adults weigh risks against quality-of-life outcomes, informing the framing of decision-support materials and qualitative study design.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\n\u003ch3\u003eAnalytical Approach\u003c/h3\u003e\n\u003cp\u003eA full thematic analysis was not undertaken, consistent with the reflective nature of a PPIE activity. Instead, the facilitator's detailed notes were reviewed inductively. This process involved repeatedly reading the notes to identify recurring concepts, patterns of phrasing, and particularly salient insights. These elements were then synthesised into three overarching interpretive themes, which are presented below with illustrative verbatim quotations to ensure the contributors' voices remain central.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eAnalysis of the discussions revealed three overarching themes that reflected how contributors conceptualised and communicated mortality risk.\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 1\u003c/b\u003e: \u003cb\u003eA Pragmatic Conceptualisation of Risk\u003c/b\u003e\u003c/p\u003e\u003cp\u003eParticipants did not engage with mortality risk as an abstract statistic but rather as a tangible, and often acceptable, part of life's calculus. Phrases such as, \"Oh, well, I know it\u0026rsquo;s there. Yes, it\u0026rsquo;s a chance you take,\" were typical. For some, professional backgrounds informed this view: \"I was a nurse for 45 years\u0026mdash;there's a risk in most things.\" A sense of gratitude and acceptance born from advanced age was also evident: \"Once you've had your 90 years, you've got to be thankful.\" This perspective fostered a calm acceptance, with one participant stating, \"No, I wasn't worried. I just had every confidence.\" Importantly, contributors consistently affirmed the value of the research topic itself. As one participant stated, \"It\u0026rsquo;s high time someone asked us,\" underscoring that as an underserved community, they felt this investigation was both important and long overdue.\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 2\u003c/b\u003e: \u003cb\u003eValues-Based Decision-Making: Quality of Life over Longevity\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe decision to undergo surgery was overwhelmingly driven by the pursuit of improved quality of life, not the mere extension of life. Participants explicitly prioritised outcomes such as pain relief (\"The chances of the pain going\") and functional independence (\"Keeping me mobile\"). An optimistic outlook was a recurring motif: \"I'm an optimist,\" and \"Life's to be lived, isn't it?\" This value set was powerfully summarised by one participant who, reflecting on their experience, said, \"If I had the choice, I'd go through it again.\"\u003c/p\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003eTheme 3: The Imperative for Compassionate Communication\u003c/h2\u003e\u003cp\u003eParticipants expressed clear preferences for how risk should be communicated. They valued honesty and clarity (\"Just tell them the risks and the advantages\") but within a context of profound respect. They rejected paternalism, with one contributor emphasising, \"You treat them as adults, not silly children,\" and another affirming, \"I think so, because we're still people.\" In terms of format, a multi-modal approach was favoured, combining simple language (\"Words\") with visual aids (\"Diagrams always help\") and short videos.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003ePPIE Impact Statement\u003c/h3\u003e\n\u003cp\u003eThis activity had direct and substantive impact on the fellowship project, directly addressing the aim of co-designing study materials and informing research delivery:\u003c/p\u003e\u003cp\u003e\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eReframed Research Focus: The findings established that communication tools must prioritise clarity, respect, and optimism over statistical precision, directly shaping the project's primary outcome.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eInformed Material Development: Insights on language and multi-modal formats (e.g., short videos, diagrams) are being used to redesign patient information leaflets and the creation of a summary infographic (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eShaped Subsequent Study Design: The themes and specific concerns raised (e.g., being treated like \"silly children\") directly informed the interview schedule for the main qualitative study, ensuring it is delivered sensitively.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eEstablished Ongoing Involvement: The activity led to the creation of a standing Public Advisory Group of older adults to provide continuous input, with several participants expressing interest in ongoing involvement.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis PPIE activity demonstrates that telephone-based engagement is a highly inclusive and effective method for capturing the nuanced perspectives of adults aged 90 years and over, a group often excluded from digital and in-person research activities. The contributors provided invaluable insights that challenge conventional clinical approaches to risk communication. They reframed surgical mortality risk from a fearful probability to a natural and acceptable aspect of life, contingent on the potential for improved quality of life.\u003c/p\u003e\u003cp\u003eA key finding was the participants' affirmation of the research's importance. By explicitly valuing the investigation into mortality communication, they highlighted a critical gap in patient-centred care for their demographic. This reinforces the necessity of PPIE not only for refining research questions but also for validating the social and ethical relevance of a study from the perspective of underserved communities.\u003c/p\u003e\u003cp\u003eThese findings counter assumptions that very elderly patients may avoid discussions about mortality. Instead, they demand such conversations be conducted with empathy, partnership, and a respect for patient autonomy. The emphasis on compassion and person-centred language over numerical detail has significant implications for both shared decision-making in clinical practice and the design of patient-facing materials.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis PPIE activity yielded three fundamental insights that directly challenge conventional clinical approaches to risk communication for adults aged 90 and over considering elective surgery. First, participants conceptualised mortality risk not as a frightening statistic, but as a pragmatic and acceptable trade-off for the potential to restore quality of life. Second, their decision-making was driven overwhelmingly by values centred on mobility, independence, and optimism, rather than a desire to extend life at all costs. Third, and most critically, they demanded compassionate communication that is clear, respectful, and multi-modal, firmly rejecting paternalistic language.\u003c/p\u003e\n\u003cp\u003eThese findings underscore that for this demographic, effective risk communication is not about avoiding the topic of mortality, but about framing it within a context of honesty, respect, and empowerment. The participants\u0026apos; clear sentiment of being an underrepresented community reinforced the critical need to actively seek and value their perspectives. By prioritising dignity and patient-identified values over numerical precision, clinicians and researchers can better partner with this growing population to support informed, values-congruent healthcare decisions. The strong endorsement from participants confirms that centring the voices of this underserved community is not only methodologically sound but also a moral and practical imperative for developing truly patient-centred care.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eConsent to Participate declaration.\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEach patient voluntarily agree to participate in this PPIE activity.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics Approval declaration\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEthical approval was not required for this Patient and Public Involvement and Engagement (PPIE) activity.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eHuman Ethics and Consent to Participate declarations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis this Patient and Public Involvement and Engagement (PPIE) activity did not require ethics approval from a human research ethics committee.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding Declaration\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis PPIE activity was made possible by funding from the Vivensa Foundation Academy Ignition Grant. The grant was awarded to support research focused on understanding and communicating mortality risk for patients aged 90 and over considering elective total hip replacement (THR).\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eGrant Funder/Institute: The Vivensa Foundation\u003c/li\u003e\n \u003cli\u003eAward Reference: 2025-AIF\\51\u003c/li\u003e\n \u003cli\u003eGrant Holder: Ravi Patel\u0026nbsp;\u003c/li\u003e\n\u003c/ul\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eEach author made significant contributions either in the conceptualisation or design of the work, or in the acquisition, analysis, or interpretation of data pertinent to the work. Additionally, each author played a vital role in drafting and revising the work. Each author also gave their approval for final manuscript draft. Furthermore, all authors have agreed to be accountable for all facets of the work, ensuring that any questions concerning the accuracy or integrity of any part of the work are thoroughly investigated and resolved.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eThis study was made possible by funding from the Vivensa Foundation Academy Ignition Grant. The grant supported essential Patient and Public Involvement and Engagement (PPIE) work, which was critical to shaping the research objectives around understanding and communicating mortality risk for nonagenarians considering elective total hip replacement for primary osteoarthritis\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eHolmes L, Cresswell K, Williams S, Parsons S, Keane A, Wilson C, Islam S, Joseph O, Miah J, Robinson E, Starling B. Innovating public engagement and patient involvement through strategic collaboration and practice. 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Hearing the voices of older adult patients: processes and findings to inform health services research. Res Involv Engagem. 2019;5:11. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1186/s40900-019-0143-5\u003c/span\u003e\u003cspan address=\"10.1186/s40900-019-0143-5\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eStaniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research \u003cem\u003eBMJ\u003c/em\u003e 2017; 358:j3453 \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1136/bmj.j3453\u003c/span\u003e\u003cspan address=\"10.1136/bmj.j3453\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDudley L, Gamble C, Allam A, Bell P, Buck D, Goodare H, Hanley B, Preston J, Walker A, Williamson P, Young B. A little more conversation please? Qualitative study of researchers' and patients' interview accounts of training for patient and public involvement in clinical trials. Trials. 2015;16:190. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1186/s13063-015-0667-4\u003c/span\u003e\u003cspan address=\"10.1186/s13063-015-0667-4\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Patient and Public Involvement, Risk, Communication, Shared decision-making, Total hip replacement, Total Hip Arthroplasty, Nonagenarian","lastPublishedDoi":"10.21203/rs.3.rs-8117526/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8117526/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground: \u003c/strong\u003ePatient and Public Involvement and Engagement (PPIE) is integral to ensuring health research remains grounded in patient priorities and lived experience. This is especially critical for underrepresented groups, such as adults aged 90 and over considering elective total hip replacement (THR). This demographic experiences a small but meaningful risk of postoperative mortality, yet conventional numeric risk communication often fails to align with their values, communication preferences, and the existential context of very advanced age. Traditional PPIE methods, like focus groups, may inadvertently exclude this group due to sensory, mobility, or digital barriers.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods: \u003c/strong\u003eThis PPIE activity engaged eight public contributors with a lived experience aged 90–96 years (including their carers) through semi-structured one-to-one telephone conversations, aligned with the GRIPP2 Short Form and UK Standards for Public Involvement. We detail our approach to building rapport and facilitating nuanced conversations remotely, focusing on three domains: research context, communication preferences, and decision-making. Our methodology was designed to prioritise relationship-building and flexibility to overcome barriers to participation.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults: \u003c/strong\u003eInductive analysis identified three central themes:\u003c/p\u003e\n\u003cp\u003e1. A Pragmatic Conceptualisation of Risk: Participants framed mortality risk as an acceptable \"chance you take,\" shaped by life experience and advanced age.\u003c/p\u003e\n\u003cp\u003e2. Values-Based Decision-Making: Quality of life outcomes: mobility, independence, and maintaining an optimistic outlook were prioritised over longevity alone.\u003c/p\u003e\n\u003cp\u003e3. The Imperative for Compassionate Communication: Participants emphasised a need for clear, respectful, and multi-modal communication, while explicitly rejecting ageist or overly clinical language.\u003c/p\u003e\n\u003cp\u003eContributors unanimously affirmed the importance of this topic, feeling that as an underserved community, their perspectives on mortality were both valuable in decision making and long overdue.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eLimitations\u003c/strong\u003e: This PPIE activity involved a small number of contributors and used telephone-only engagement. While this ensured accessibility, it may limit transferability to other contexts. Future work should test alternative formats and include larger, more diverse samples to enhance generalisability to the nonagenarian populations. Nonetheless, the rich feedback insights from this unrepresented group provide a valuable foundation for future work\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions: \u003c/strong\u003eThe findings challenge the primacy of numerical risk presentation for this demographic, underscoring that communication must prioritise dignity, optimism, and clarity. Crucially, contributors affirmed that discussing mortality is a necessary part of informed consent, countering assumptions that this topic should be avoided. These insights directly inform more sensitive and relevant research design and clinical communication tools, ensuring they are grounded in the values and priorities of the patients they are meant to serve.\u003c/p\u003e","manuscriptTitle":"Patient and Public Involvement to Co-Design How We Understand and Communicate Mortality Risk for Patients Aged 90 and Over Considering Elective Total Hip Replacement (THR)","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-11-28 08:49:25","doi":"10.21203/rs.3.rs-8117526/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-03-18T15:55:56+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-18T15:41:31+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"157669928007716923546280842706208809695","date":"2026-02-23T10:11:48+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"53753440896135948330457418980490176734","date":"2026-01-19T12:00:12+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"306485536290440947293317092288418034046","date":"2025-12-14T13:07:22+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"232244061241599709343490738724220930495","date":"2025-12-11T06:24:11+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-12-09T15:10:40+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-12-08T15:36:31+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"48338584417809796118750374920049036091","date":"2025-11-19T15:13:49+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"76937451044568075245214042530792408522","date":"2025-11-19T13:28:48+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-11-19T11:41:22+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-11-19T11:39:08+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-11-19T10:30:54+00:00","index":"","fulltext":""},{"type":"submitted","content":"Research Involvement and Engagement","date":"2025-11-14T18:08:47+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"07fb6281-e924-4d17-9c80-42ec75464b70","owner":[],"postedDate":"November 28th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-27T12:12:21+00:00","versionOfRecord":[],"versionCreatedAt":"2025-11-28 08:49:25","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8117526","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8117526","identity":"rs-8117526","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}