Prospective survey amongst cancer patients and their respective caregivers regarding their expectations from and preferences regarding their treatment

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While patient-centred care has advanced, caregiver perspectives remain underexplored in India, where families strongly influence treatment decisions. This study examined: (1) treatment priorities of cancer patients and caregivers, (2) the degree of agreement between them, and (3) the role of financial responsibility in shaping choices. Methods A cross-sectional, multicentric survey was conducted among 373 patient–caregiver dyads from 17 medical colleges across 11 Indian states. Paired questionnaires were completed independently. Descriptive statistics summarised treatment preferences and financial contributions. Associations were tested using Chi-square/Fisher’s exact tests, correlations assessed with Spearman’s and Pearson’s coefficients, and concordance measured by kappa statistics. Results Patients predominantly prioritised “best chance of cure” (56.9%) and “longest survival” (21.4%), whereas caregivers more frequently considered treatment costs and logistics. Concordance between patients and caregivers was fair for the first preference (Kappa = 0.2742) but declined to negligible levels for subsequent choices. Financial responsibility was not significantly associated with primary treatment preference (p = 0.294). Younger caregivers were more likely to contribute financially than older ones (ρ = -0.847, p < 0.01). Entry into clinical trials ranked lowest for both groups. Conclusion Patients and caregivers differ in their treatment priorities, with patients favouring survival outcomes and caregivers emphasising financial and practical considerations. These divergences highlight the importance of structured, empathetic communication to align expectations and support shared decision-making in cancer care. cancer treatment priorities patient-caregiver dyad shared decision-making India financial toxicity Figures Figure 1 Figure 2 Figure 3 Introduction When faced with the diagnosis of cancer, there is a dramatic shift in priorities and perspectives for most patients and their families. Numerous uncertainties, stigmas and doubts about treatment options and outcomes exist, often influenced by cultural, socioeconomic, and psychological challenges. [ 1 ] While some respond with acceptance and proactive engagement in treatment, most others struggle with denial, fear, or financial strain. [ 2 , 3 ]The psychological toll of caregiving adds another dimension. [ 4 , 5 ] In the past few years, there has been significant progress around patient-centred care and their expectations from their treatment, but limited knowledge about caregivers’ perspectives and inclusion. [ 6 ] The role of caregivers becomes mandatory amongst the vulnerable population of patients, including pediatric age groups, geriatric age groups and in unresponsive or critical patients. Is it possible that treatment goals in cancer patients might not be aligned with the expectations of their caregivers? What should an oncologist do if the caregiver wants the diagnosis of cancer not to be disclosed to their patient? What if the patient desires one thing and the caregiver chooses something else? Can communication between patients, caregivers, and oncologists resolve decisional conflicts and help align treatment goals? [ 7 , 8 ] Since social and cultural values often influence treatment priorities, we decided to understand this landscape in the Indian context, where strong familial structures are prevalent impact on healthcare decisions. [ 9 ] To identify and bridge existing knowledge gaps, our study focused on three primary objectives: 1) understanding cancer treatment priorities by the patients and their caregivers, 2) assessing the agreement in their preferences, and 3) understanding the impact of financial responsibility on treatment priorities. We specifically used the paired survey methodology to neutralise other confounding factors and achieve our objectives. (socioeconomic, geographical, and financial disparities) Methodology We conducted a cross-sectional observational study to document the preferences of cancer patients and their caregivers regarding treatment choices. Paired surveys were administered to both patients and their respective caregivers to assess the level of agreement (or not) between their responses. These were administered across different medical colleges in India (Figure I: Statewise geographical distribution of paired sample data). The patients were deidentified, and verbal informed consent was taken before requesting them to fill out the form (online Google Forms or hard copies). No patient, cancer or treatment-specific details were required to be divulged. Participants included cancer patients and their primary caregivers. The inclusion criteria for patients were: (1) self-certified confirmed diagnosis of cancer, and (2) willingness to participate. Caregivers were defined as individuals accompanying the patient to the hospital/ medical college/ healthcare facility. Both patients and caregivers completed the survey questionnaire independently. Descriptive statistics were used to summarise demographic and financial contribution patterns. Chi-square and Fisher's Exact tests were conducted to evaluate associations between categorical variables. The strength of associations was assessed using Cramér’s V and Phi coefficients. Agreement between patient and caregiver responses was measured using kappa statistics. Correlation analyses, including Spearman’s rank and Pearson’s correlation, were used to explore relationships between age, financial contributions, and decision-making factors. A significance level of 0.05 was used for all statistical tests. Results A total of 373 paired patients and their caregivers participated in this survey from 17 medical colleges in 11 states across India. Treatment Prioritisation Patterns Analysis of responses revealed a pattern among treatment preferences. The ranking of the most important treatment consideration showed a moderate negative correlation with the second choice (ρ = -0.592, p < 0.01), and a weaker negative correlation with the third choice (ρ = -0.233, p < 0.01), suggesting a systematic trade-off in preferences as choices progressed. Patients predominantly selected “best chance of cure” as their top priority (212 votes, 56.9%), followed by “longest survival” (80 votes, 21.4%), highlighting a clear emphasis on survival outcomes. Interestingly, in a small but significant number of patients, factors such as “least side effects” (33 votes, 8.8%) and “least out-of-pocket expenses” (26 votes, 7.0%) were the most important consideration as first preferences, pushing cure and survival to lower priority. Financial Factors and Decision-Making Among the respondents, only 113 patients (30.3%) reported bearing most of their treatment costs. The Fisher’s Exact test (7.080, p = 0.294) found no significant association between financial contribution status and first-choice treatment preference. Similarly, Phi and Cramér’s V values (0.099) indicated a weak association. Further, a Pearson Chi-square analysis (χ² = 12.351, df = 6, p = 0.055) showed a marginal association between being the primary income provider and treatment preference selection, though the effect size was small (Cramér’s V = 0.128). Interestingly, a significant negative correlation was found between caregiver age and financial responsibility (ρ = -0.847, p < 0.01), suggesting that younger caregivers were more likely to contribute financially, while older caregivers were more likely to accompany older cancer patients. Entry into clinical trials was not on the minds of either the patient or their caregivers. This option was the sixth preference in 216 instances. Patient-Caregiver Concordance Figure II illustrates differences in treatment priorities between patients and caregivers. Kappa statistics revealed a declining trend in agreement between patient and caregiver choices as preference rank increased. The highest concordance occurred for the first choice (Kappa = 0.2742, indicating fair agreement), but agreement declined progressively across subsequent preferences. Beyond the third choice, concordance was, not unexpectedly, poor to negligible agreement (Table I). To further explore differences, a Chi-square test was conducted to assess divergence in the first preference between groups (Figure III). The highest disagreements were observed for treatment cost (6.5) and number of hospital visits (5.9), suggesting that caregivers give more emphasis to financial and logistic consideration, probably because they consider the bigger picture of balancing family responsibilities and income This trend reflects real-world dynamics in India, SAARC region as well as other low and middle income countries. Facilitating open and frank communication between patients and caregivers is essential to aligning their goals. While conducting our survey, some caregivers spontaneously conveyed their real-world thoughts, feelings, and experiences. Some of them are shown in Table II. Discussion Cancer is not only a disease that affects an individual but also profoundly impacts their support network, particularly their caregivers. Treatment decisions, therefore, often involve a dynamic interplay between the patient's desires and the caregiver's concerns and priorities. Our study shed light on these multifaceted treatment preferences in cancer care by taking into account both patients' and caregivers' perspectives, highlighting the need for an integrated treatment decision-making in chronic diseases like cancer. Patients prioritised "best chance of cure" and "longest survival" as their top treatment goals, reflecting a strong inclination toward life-prolonging interventions. This aligns with global literature indicating that patients often associate cancer treatment with curative intent, even in advanced stages of disease[ 10 ]. The observed moderate negative correlation between first and second treatment choices (ρ = -0.592, p < 0.01) and the weaker negative correlation with the third choice (ρ = -0.233, p < 0.01) suggests that these choices were made thoughtfully, with patients demonstrating clear trade-offs as they progressed through the options. A subset of patients placed greater importance on minimising side effects and out-of-pocket costs, indicating the presence of subgroups with differing personal or financial vulnerabilities. Such heterogeneity has been observed in studies from other low- and middle-income countries (LMICS), where treatment choices are often influenced by disease stage, socioeconomic status, and access to healthcare [ 11 ]. Financial Factors: Subtle yet Significant Influences Although only 30.3% of patients reported being the primary financial contributors to their treatment, statistical analyses (Fisher’s Exact test and Cramér’s V) revealed no strong association between financial responsibility and treatment preference. This finding is in contrast to the 2024 JAMA study, where 28% of the patients prioritised cost containment, whereas only 17% of caregivers prioritised it, and the goals of care remained stable as patients near death. [ 12 ] A significant negative correlation between caregiver age and financial contribution (ρ = -0.847, p < 0.01) suggests that younger caregivers are more likely to bear financial responsibility, potentially due to generational shifts in caregiving and employment status. The marginal association between being a primary income earner and treatment preference (χ² = 12.351, p = 0.055) indicates a trend toward more economically driven treatment decisions among working-age individuals. Cancer care choices are significantly influenced by direct (treatment, investigations, palliative, etc) and indirect costs (lost work, income, and savings) in LMICS [ 11 ]. Another important factor affecting out-of-pocket expenses in cancer is the time of diagnosis; advanced-stage cancers involve a greater financial burden as compared to early detection, signifying the importance of screening techniques. [ 13 ] These costs can cause financial toxicity due to cancer. Development of nomogram models predicting early financial toxicity can be utilised by hospitals and treating medical staff to help these patients by providing cost-effective treatment approaches and care. [ 14 ] In India, one of the real-world solutions to reduce financial toxicity is the launch of Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (PMJAY), covering most of the costs for economically backwards and vulnerable families in government setups. [ 15 ] Some challenges faced by patients while availing this insurance scheme include a lack of awareness and education, doesn’t cover rare drugs and advanced costs, doesn’t include the latest treatment costs, and refusal at private setups and independent diagnostic laboratories (radiological, pathological tests) to apply this scheme. [ 16 , 17 ] Caregiver Perspectives: Limited Concordance Beyond Initial Preferences Our study revealed a progressive decline in agreement between patients and caregivers across treatment preferences, with fair agreement only for the first choice (Kappa = 0.2742). This suggests that while initial treatment goals may be aligned, divergence occurs as more nuanced decisions are considered, reflected by the perspectives given in Table II. Caregivers often prioritise factors such as treatment cost and the number of hospital visits, reflecting their broader roles in managing family responsibilities and logistical challenges. These findings are consistent with previous research indicating that caregivers may have differing expectations and priorities compared to patients, influenced by their caregiving responsibilities and the practical implications of treatment decisions [ 18 ]. Open and empathetic communication between patients and caregivers, ensuring that both perspectives are acknowledged and integrated, while treatment decision making is necessary for the well-being of not only the patients but their close ones too.[ 19 ] Implementing structured communication strategies, such as values clarification exercises and decision aids, can enhance mutual understanding and agreement on treatment choices. These tools assist in elucidating individual preferences and aligning them with available medical options, thereby promoting shared decision-making. [ 20 , 21 ] Implications for Practice and Future Directions These findings, along with the real-world narratives in Table II, underscore the importance of integrating both patient and caregiver perspectives into cancer care planning. For older patients or those dependent on others, caregivers play a crucial role in navigating the treatment journey. Healthcare providers should foster open conversations that align expectations and acknowledge real-world constraints. Clinician training in different aspects of cancer care and treatment could be beneficial to foster collaborative treatment decision-making. Patient-centred communication training in circumstances with patients at end-of-life requiring hospice care, palliative care referrals, cost-effective strategies, etc., could be helpful to address unknown concerns of the patient and the caregivers while decision making. When patients opt not to be fully informed about their treatment options or diagnosis and regimen, caregivers take on a significant role in determining treatment preferences. It is crucial to acknowledge the coping mechanisms of these caregivers and provide them with guidance, emphasising the importance of honest communication between them and the patient. Appropriate reasons behind each treatment preference should be explored, and a constructive communication approach should be utilised. Disclosure of treatment options must also navigate patients’ readiness for information, emotional state, and trust in medical authority. Studies suggest that patients who are better informed tend to be more satisfied and make more value-aligned choices. [ 20 ] As oncology increasingly moves toward personalisation, personalisation must include not only the tumour and biology but also the lived experiences and priorities of both the patient and their caregivers. The primary strengths of our study lie in the paired dyad methodology, the diversity of the population subsets and the significant sample size to address a notable gap in the literature. It represents one of the few studies focusing on different treatment priorities among cancer patients and their caregivers in India and globally. Further research stratifying the data based on cancer type, age at diagnosis, the consistency of the expectations over time, and geographical locations could be done for a deeper understanding of patient and caregiver expectations from cancer treatment. Some key messages from our study are summarised in Table III. Conclusion Our data provides a unique documentation of treatment expectations from cancer patients and their respective caregivers. This provides a novel insight into the challenges faced by families fighting cancer and opens up new opportunities to improve communication and arrive at a treatment consensus in which all important stakeholders have the opportunity to be understood. Often, the healthcare team is unaware of the unique socioeconomic, economic, and logistical issues faced by families. Unless these are factored in while making the treatment plan, compliance and hence outcomes are likely to be compromised. Abbreviations AB PM-JAY / PMJAY – Ayushman Bharat Pradhan Mantri Jan Arogya Yojana CT – Computed Tomography ICU – Intensive Care Unit LMICs – Low- and Middle-Income Countries MRI – Magnetic Resonance Imaging QoL – Quality of Life SAARC – South Asian Association for Regional Cooperation USG – Ultrasonography Declarations Competing Interests The authors have no relevant financial or non-financial interests to disclose. Ethics approval This study was performed in accordance with the Declaration of Helsinki. The Integrated Academic Society of Clinical Oncology’s ethical board reviewed the study protocol and confirmed that formal ethical approval was not required, as it was an observational survey-based study without clinical intervention, or access to medical records. Consent to Participate Participation was voluntary and informed consent was obtained from all participants. Funding The authors declare that no funds, grants, or other support were received during the preparation of this manuscript. Author Contribution All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Mansi Agrawal, Dr. Shaheed Shaik , Mohammad Orooj Azmi, , Dr. Sejal Grover, Uma Ashish Gupta, Harshita Agarwal , Urmila Gopinat, S. Harsha Varthini, Karma Jayeshkumar Patel, Keerthana Veluswami, Hritik Rasikkumar Salva, Aastha Gupta, Khooshi Bharat Patel, Mallika Mittal , Fatima Nadeem, Dr Archana Sameer Vinarkar , Varshitha KK, Parikh Purvish M. The first draft of the manuscript was written by Praveen Nandha Kumar Pitchan Velammal, Karthik Kanna Venkatesh , Anika Goel, Niharika Singh, Aarnav Pathak, Mansi Agrawal and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript. 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National Academies Press, Washington, DC. https://doi.org/10.17226/18359 Tables Table I: Agreement between choices preferred by patients and caregivers via Kappa values Preference Rank Kappa Statistic Interpretation of Agreement First Preference 0.2742 Fair Agreement Second Preference 0.230 Slight to Fair Agreement Third Preference 0.194 Slight Agreement Fourth Preference 0.158 Poor to Slight Agreement Fifth Preference 0.126 Poor Agreement Sixth Preference 0.087 Very Poor Agreement Seventh Preference 0.042 No Agreement Table II: Snapshots of representative narratives by caregivers: Real-world insights S. No Caregiver’s statement Interpretation of their experience My brother died of lung cancer in my arms Disappointment with treatment and feeling of hopelessness, grief over their and the doctor’s efforts I was denied leave to attend to my dying mother. I had to beg my head of the department for leave Ignorance of the importance of the caregiver's presence and involvement in attending to the patient. I lost my mother to ovarian cancer. On her last day, she asked for water, which I refused as she was to undergo surgery. Guilt and emotional distress over medical decisions, feelings of helplessness and regret. I had to keep my sister in the ICU till both her daughters completed their exams (in a different city) The emotional and ethical burden of prolonging life support for family reasons, balancing medical decisions with personal obligations. In my final year of the medical oncology program, both my parents died of cancer Profound personal loss while pursuing a medical career, potential emotional exhaustion and resilience challenges. My grandmother and my friend’s grandmother both died fighting colorectal carcinoma. My parents still wonder what harm they did that caused them such death, and what better treatment they could have endured. Guilt, helplessness, and unresolved questions about disease causation and adequacy of treatment. Possible influence of cultural and spiritual beliefs. The hospital doesn’t have MRI services. We have to pay out of our pocket for every imaging modality except for the CT scan and USG. Even the genomic sequencing tests cost heavily to us since Ayushman was not applicable in the independent laboratories. But still, we got everything done in hopes of the best available treatment. Financial burden and disparity in healthcare access, and determination to seek the best possible care despite economic hardships. Prominent in sections where health insurance is a big challenge and has various loopholes. Table II: Key Messages Key Point Key Message Patient-Caregiver Agreement Often, there is an ill-understood dichotomy between the expectations of patients with cancer and their caregivers. Divergence in Priorities While the majority of cancer patients want the best chance of cure or longest survival, a significant number have other priorities ( better quality of life, fewer side effects, less out-of-pocket expenses, fewer visits to the hospital) Emotional and Ethical Burden The emotional struggles and ethical dilemmas faced by caregivers are ill understood. They have to balance the needs of the entire family, and an empathetic approach is necessary to understand the unstated reason behind the priorities they choose. Financial Considerations Financial toxicity, while not the primary concern for most patients, exists under the surface. If not taken into consideration while finalising the treatment plan, there is a higher chance of treatment abandonment. Implications for Policy change and improvement in healthcare infrastructure Government insurance schemes now allow greater access to cancer treatment. – especially to the vulnerable strata of society. Our survey results can provide the basis for further refinement in healthcare policy, to truly make the treatment decision-making in sync with their expectations and circumstances. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7771114","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":545632932,"identity":"3a0ac8b5-f5e9-418e-af4c-d7d54d59b74c","order_by":0,"name":"Mansi Agrawal","email":"data:image/png;base64,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","orcid":"","institution":"Undergraduate Medical Student, Mahatma Gandhi Memorial Medical College","correspondingAuthor":true,"prefix":"","firstName":"Mansi","middleName":"","lastName":"Agrawal","suffix":""},{"id":545632933,"identity":"6f407483-bfae-4c78-84bc-02cdcb0bc117","order_by":1,"name":"Shaheed Shaik","email":"","orcid":"","institution":"Kakatiya Medical College","correspondingAuthor":false,"prefix":"","firstName":"Shaheed","middleName":"","lastName":"Shaik","suffix":""},{"id":545632934,"identity":"74a82e79-e69f-46f8-9ab1-1f0c466096da","order_by":2,"name":"Mohammad Orooj Azmi","email":"","orcid":"","institution":"Institute of Post Graduate Medical Education and Research","correspondingAuthor":false,"prefix":"","firstName":"Mohammad","middleName":"Orooj","lastName":"Azmi","suffix":""},{"id":545632935,"identity":"72feed20-01e8-411d-b257-66e96d41432f","order_by":3,"name":"Praveen Nandha Kumar Pitchan Velammal","email":"","orcid":"","institution":"Tirunelveli Medical College","correspondingAuthor":false,"prefix":"","firstName":"Praveen","middleName":"Nandha Kumar Pitchan","lastName":"Velammal","suffix":""},{"id":545632936,"identity":"5425996c-63cb-4711-8db4-33f2d35ce836","order_by":4,"name":"Sejal Grover","email":"","orcid":"","institution":"Lokmanya Tilak Municipal General Hospital and Lokmanya Tilak Municipal Medical College","correspondingAuthor":false,"prefix":"","firstName":"Sejal","middleName":"","lastName":"Grover","suffix":""},{"id":545632937,"identity":"f2450794-dbf7-49fd-ac89-3a47ff6cbbcc","order_by":5,"name":"Uma Ashish Gupta","email":"","orcid":"","institution":"Nurture Oncology","correspondingAuthor":false,"prefix":"","firstName":"Uma","middleName":"Ashish","lastName":"Gupta","suffix":""},{"id":545632938,"identity":"85c85b9a-9baa-41aa-b83f-270ef0509b93","order_by":6,"name":"Harshita Agarwal","email":"","orcid":"","institution":"Institute of Post Graduate Medical Education and Research","correspondingAuthor":false,"prefix":"","firstName":"Harshita","middleName":"","lastName":"Agarwal","suffix":""},{"id":545632939,"identity":"927d85a9-6ebd-4135-b4b1-c8f294aeb9fc","order_by":7,"name":"Urmila Gopinath","email":"","orcid":"","institution":"Government Tiruvannamalai Medical College","correspondingAuthor":false,"prefix":"","firstName":"Urmila","middleName":"","lastName":"Gopinath","suffix":""},{"id":545632940,"identity":"2fd79569-4314-4da1-b76c-f7bbcd604369","order_by":8,"name":"Anika Goel","email":"","orcid":"","institution":"Kakatiya University","correspondingAuthor":false,"prefix":"","firstName":"Anika","middleName":"","lastName":"Goel","suffix":""},{"id":545632941,"identity":"d306fb57-e250-4399-9b6c-2b6158d03c0c","order_by":9,"name":"S. Harsha Varthini","email":"","orcid":"","institution":"Kazan State Medical University","correspondingAuthor":false,"prefix":"","firstName":"S.","middleName":"Harsha","lastName":"Varthini","suffix":""},{"id":545632942,"identity":"a9e4c15f-0c71-4849-9dda-bca9fe441ce9","order_by":10,"name":"Karma Jayeshkumar Patel","email":"","orcid":"","institution":"Maulana Azad Medical College","correspondingAuthor":false,"prefix":"","firstName":"Karma","middleName":"Jayeshkumar","lastName":"Patel","suffix":""},{"id":545632943,"identity":"8cdbf553-b6bf-47b2-a43a-2ffddcbe719a","order_by":11,"name":"Karthik Kanna Venkatesh","email":"","orcid":"","institution":"Jawaharlal Institute of Post Graduate Medical Education and Research","correspondingAuthor":false,"prefix":"","firstName":"Karthik","middleName":"Kanna","lastName":"Venkatesh","suffix":""},{"id":545632944,"identity":"e8de42d4-5d50-4481-8277-2c0aacd56c1e","order_by":12,"name":"Keerthana Veluswami","email":"","orcid":"","institution":"Erode Cancer 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College","correspondingAuthor":false,"prefix":"","firstName":"Aastha","middleName":"","lastName":"Gupta","suffix":""},{"id":545632948,"identity":"beefbca9-f570-473a-b128-0a796e41a830","order_by":16,"name":"Niharika Singh","email":"","orcid":"","institution":"Maulana Azad Medical College","correspondingAuthor":false,"prefix":"","firstName":"Niharika","middleName":"","lastName":"Singh","suffix":""},{"id":545632949,"identity":"93ca43e7-83d1-4b88-af01-25a9188750f4","order_by":17,"name":"Khooshi Bharat Patel","email":"","orcid":"","institution":"Surat Municipal Institute of Medical Education and Research","correspondingAuthor":false,"prefix":"","firstName":"Khooshi","middleName":"Bharat","lastName":"Patel","suffix":""},{"id":545632950,"identity":"93ac5ef7-0fa5-4399-bebc-9bb22323acb1","order_by":18,"name":"Mallika Mittal","email":"","orcid":"","institution":"Punjab Institute of Medical 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1","display":"","copyAsset":false,"role":"figure","size":46686,"visible":true,"origin":"","legend":"\u003cp\u003eState-wise geographical contribution of the paired sample \u0026nbsp;data (Telangana- 95, Tamil Nadu- 85, West Bengal- 56, Maharashtra- 55, Delhi- 32, Gujarat- 10, Karnataka- 10, Punjab- 10, Pondicherry- 10, Uttar Pradesh- 10)\u003c/p\u003e","description":"","filename":"floatimage1.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-7771114/v1/754cdf0330e7eea7112ffc89.jpeg"},{"id":96249231,"identity":"6de0cbb2-3a4f-4b80-904d-6f0ad4339b96","added_by":"auto","created_at":"2025-11-19 07:30:56","extension":"jpeg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":66728,"visible":true,"origin":"","legend":"\u003cp\u003eHeatmap showing divergence between the first treatment preferences between patients and their caregivers (chi-square values)\u003c/p\u003e","description":"","filename":"floatimage3.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-7771114/v1/9ffd9aff3a585b534eef0f83.jpeg"},{"id":96248445,"identity":"e39a2360-0cb3-49ce-851a-b42ff61c8b6b","added_by":"auto","created_at":"2025-11-19 07:28:27","extension":"jpeg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":54644,"visible":true,"origin":"","legend":"\u003cp\u003eSankey graph showing first treatment preferences of expectations from treatment, between patients and caregivers (minimum visits to doctor: 5% by patients, 11% caregivers; least side effects: 10% patients, 35% caregivers; least out-of-pocket expenses: 5% patients, 14% caregivers)\u003c/p\u003e","description":"","filename":"floatimage2.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-7771114/v1/5cbdd6c74c807329bd726c23.jpeg"},{"id":103049605,"identity":"ba931794-5aa1-40c7-a4d5-da0cd192d038","added_by":"auto","created_at":"2026-02-20 07:43:40","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":929649,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7771114/v1/bbffc14d-e2af-456f-a959-c052179f3c56.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Prospective survey amongst cancer patients and their respective caregivers regarding their expectations from and preferences regarding their treatment","fulltext":[{"header":"Introduction","content":"\u003cp\u003eWhen faced with the diagnosis of cancer, there is a dramatic shift in priorities and perspectives for most patients and their families. Numerous uncertainties, stigmas and doubts about treatment options and outcomes exist, often influenced by cultural, socioeconomic, and psychological challenges. [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e] While some respond with acceptance and proactive engagement in treatment, most others struggle with denial, fear, or financial strain. [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]The psychological toll of caregiving adds another dimension. [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e] In the past few years, there has been significant progress around patient-centred care and their expectations from their treatment, but limited knowledge about caregivers\u0026rsquo; perspectives and inclusion. [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e] The role of caregivers becomes mandatory amongst the vulnerable population of patients, including pediatric age groups, geriatric age groups and in unresponsive or critical patients. Is it possible that treatment goals in cancer patients might not be aligned with the expectations of their caregivers? What should an oncologist do if the caregiver wants the diagnosis of cancer not to be disclosed to their patient? What if the patient desires one thing and the caregiver chooses something else? Can communication between patients, caregivers, and oncologists resolve decisional conflicts and help align treatment goals? [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]\u003c/p\u003e\u003cp\u003eSince social and cultural values often influence treatment priorities, we decided to understand this landscape in the Indian context, where strong familial structures are prevalent impact on healthcare decisions. [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e] To identify and bridge existing knowledge gaps, our study focused on three primary objectives: 1) understanding cancer treatment priorities by the patients and their caregivers, 2) assessing the agreement in their preferences, and 3) understanding the impact of financial responsibility on treatment priorities. We specifically used the paired survey methodology to neutralise other confounding factors and achieve our objectives. (socioeconomic, geographical, and financial disparities)\u003c/p\u003e"},{"header":"Methodology","content":"\u003cp\u003eWe conducted a cross-sectional observational study to document the preferences of cancer patients and their caregivers regarding treatment choices. Paired surveys were administered to both patients and their respective caregivers to assess the level of agreement (or not) between their responses. These were administered across different medical colleges in India (Figure I: Statewise geographical distribution of paired sample data). The patients were deidentified, and verbal informed consent was taken before requesting them to fill out the form (online Google Forms or hard copies). No patient, cancer or treatment-specific details were required to be divulged.\u003c/p\u003e\n\u003cp\u003eParticipants included cancer patients and their primary caregivers. The inclusion criteria for patients were: (1) self-certified confirmed diagnosis of cancer, and (2) willingness to participate. Caregivers were defined as individuals accompanying the patient to the hospital/ medical college/ healthcare facility. Both patients and caregivers completed the survey questionnaire independently.\u003c/p\u003e\n\u003cp\u003eDescriptive statistics were used to summarise demographic and financial contribution patterns. Chi-square and Fisher\u0026apos;s Exact tests were conducted to evaluate associations between categorical variables. The strength of associations was assessed using Cram\u0026eacute;r\u0026rsquo;s V and Phi coefficients. Agreement between patient and caregiver responses was measured using kappa statistics. Correlation analyses, including Spearman\u0026rsquo;s rank and Pearson\u0026rsquo;s correlation, were used to explore relationships between age, financial contributions, and decision-making factors. A significance level of 0.05 was used for all statistical tests.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eA total of 373 paired patients and their caregivers participated in this survey from 17 medical colleges in 11 states across India.\u003c/p\u003e\n\u003ch3\u003eTreatment Prioritisation Patterns\u003c/h3\u003e\n\u003cp\u003eAnalysis of responses revealed a pattern among treatment preferences. The ranking of the most important treatment consideration showed a moderate negative correlation with the second choice (\u0026rho; = -0.592, \u003cem\u003ep\u003c/em\u003e\u0026thinsp;\u0026lt;\u0026thinsp;0.01), and a weaker negative correlation with the third choice (\u0026rho; = -0.233, \u003cem\u003ep\u003c/em\u003e\u0026thinsp;\u0026lt;\u0026thinsp;0.01), suggesting a systematic trade-off in preferences as choices progressed.\u003c/p\u003e\n\u003cp\u003ePatients predominantly selected \u0026ldquo;best chance of cure\u0026rdquo; as their top priority (212 votes, 56.9%), followed by \u0026ldquo;longest survival\u0026rdquo; (80 votes, 21.4%), highlighting a clear emphasis on survival outcomes. Interestingly, in a small but significant number of patients, factors such as \u0026ldquo;least side effects\u0026rdquo; (33 votes, 8.8%) and \u0026ldquo;least out-of-pocket expenses\u0026rdquo; (26 votes, 7.0%) were the most important consideration as first preferences, pushing cure and survival to lower priority.\u003c/p\u003e\n\u003ch3\u003eFinancial Factors and Decision-Making\u003c/h3\u003e\n\u003cp\u003eAmong the respondents, only 113 patients (30.3%) reported bearing most of their treatment costs. The Fisher\u0026rsquo;s Exact test (7.080, \u003cem\u003ep\u003c/em\u003e\u0026thinsp;=\u0026thinsp;0.294) found no significant association between financial contribution status and first-choice treatment preference. Similarly, Phi and Cram\u0026eacute;r\u0026rsquo;s V values (0.099) indicated a weak association.\u003c/p\u003e\n\u003cp\u003eFurther, a Pearson Chi-square analysis (\u0026chi;\u0026sup2; = 12.351, \u003cem\u003edf\u003c/em\u003e\u0026thinsp;=\u0026thinsp;6, \u003cem\u003ep\u003c/em\u003e\u0026thinsp;=\u0026thinsp;0.055) showed a marginal association between being the primary income provider and treatment preference selection, though the effect size was small (Cram\u0026eacute;r\u0026rsquo;s V\u0026thinsp;=\u0026thinsp;0.128). Interestingly, a significant negative correlation was found between caregiver age and financial responsibility (\u0026rho; = -0.847, \u003cem\u003ep\u003c/em\u003e\u0026thinsp;\u0026lt;\u0026thinsp;0.01), suggesting that younger caregivers were more likely to contribute financially, while older caregivers were more likely to accompany older cancer patients.\u003c/p\u003e\n\u003cp\u003eEntry into clinical trials was not on the minds of either the patient or their caregivers. This option was the sixth preference in 216 instances.\u003c/p\u003e\n\u003ch3\u003ePatient-Caregiver Concordance\u003c/h3\u003e\n\u003cp\u003eFigure II illustrates differences in treatment priorities between patients and caregivers. Kappa statistics revealed a declining trend in agreement between patient and caregiver choices as preference rank increased. The highest concordance occurred for the first choice (Kappa\u0026thinsp;=\u0026thinsp;0.2742, indicating fair agreement), but agreement declined progressively across subsequent preferences. Beyond the third choice, concordance was, not unexpectedly, poor to negligible agreement (Table I).\u003c/p\u003e\n\u003cp\u003eTo further explore differences, a Chi-square test was conducted to assess divergence in the first preference between groups (Figure III). The highest disagreements were observed for treatment cost (6.5) and number of hospital visits (5.9), suggesting that caregivers give more emphasis to financial and logistic consideration, probably because they consider the bigger picture of balancing family responsibilities and income This trend reflects real-world dynamics in India, SAARC region as well as other low and middle income countries.\u003c/p\u003e\n\u003cp\u003eFacilitating open and frank communication between patients and caregivers is essential to aligning their goals. While conducting our survey, some caregivers spontaneously conveyed their real-world thoughts, feelings, and experiences. Some of them are shown in Table II.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eCancer is not only a disease that affects an individual but also profoundly impacts their support network, particularly their caregivers. Treatment decisions, therefore, often involve a dynamic interplay between the patient's desires and the caregiver's concerns and priorities. Our study shed light on these multifaceted treatment preferences in cancer care by taking into account both patients' and caregivers' perspectives, highlighting the need for an integrated treatment decision-making in chronic diseases like cancer.\u003c/p\u003e\u003cp\u003ePatients prioritised \"best chance of cure\" and \"longest survival\" as their top treatment goals, reflecting a strong inclination toward life-prolonging interventions. This aligns with global literature indicating that patients often associate cancer treatment with curative intent, even in advanced stages of disease[\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. The observed moderate negative correlation between first and second treatment choices (ρ = -0.592, p\u0026thinsp;\u0026lt;\u0026thinsp;0.01) and the weaker negative correlation with the third choice (ρ = -0.233, p\u0026thinsp;\u0026lt;\u0026thinsp;0.01) suggests that these choices were made thoughtfully, with patients demonstrating clear trade-offs as they progressed through the options. A subset of patients placed greater importance on minimising side effects and out-of-pocket costs, indicating the presence of subgroups with differing personal or financial vulnerabilities. Such heterogeneity has been observed in studies from other low- and middle-income countries (LMICS), where treatment choices are often influenced by disease stage, socioeconomic status, and access to healthcare [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e].\u003c/p\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003eFinancial Factors: Subtle yet Significant Influences\u003c/h2\u003e\u003cp\u003eAlthough only 30.3% of patients reported being the primary financial contributors to their treatment, statistical analyses (Fisher\u0026rsquo;s Exact test and Cram\u0026eacute;r\u0026rsquo;s V) revealed no strong association between financial responsibility and treatment preference. This finding is in contrast to the 2024 JAMA study, where 28% of the patients prioritised cost containment, whereas only 17% of caregivers prioritised it, and the goals of care remained stable as patients near death. [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e] A significant negative correlation between caregiver age and financial contribution (ρ = -0.847, p\u0026thinsp;\u0026lt;\u0026thinsp;0.01) suggests that younger caregivers are more likely to bear financial responsibility, potentially due to generational shifts in caregiving and employment status. The marginal association between being a primary income earner and treatment preference (χ\u0026sup2; = 12.351, p\u0026thinsp;=\u0026thinsp;0.055) indicates a trend toward more economically driven treatment decisions among working-age individuals.\u003c/p\u003e\u003cp\u003eCancer care choices are significantly influenced by direct (treatment, investigations, palliative, etc) and indirect costs (lost work, income, and savings) in LMICS [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. Another important factor affecting out-of-pocket expenses in cancer is the time of diagnosis; advanced-stage cancers involve a greater financial burden as compared to early detection, signifying the importance of screening techniques. [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e] These costs can cause financial toxicity due to cancer. Development of nomogram models predicting early financial toxicity can be utilised by hospitals and treating medical staff to help these patients by providing cost-effective treatment approaches and care. [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e] In India, one of the real-world solutions to reduce financial toxicity is the launch of Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (PMJAY), covering most of the costs for economically backwards and vulnerable families in government setups. [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e] Some challenges faced by patients while availing this insurance scheme include a lack of awareness and education, doesn\u0026rsquo;t cover rare drugs and advanced costs, doesn\u0026rsquo;t include the latest treatment costs, and refusal at private setups and independent diagnostic laboratories (radiological, pathological tests) to apply this scheme. [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eCaregiver Perspectives: Limited Concordance Beyond Initial Preferences\u003c/h3\u003e\n\u003cp\u003eOur study revealed a progressive decline in agreement between patients and caregivers across treatment preferences, with fair agreement only for the first choice (Kappa\u0026thinsp;=\u0026thinsp;0.2742). This suggests that while initial treatment goals may be aligned, divergence occurs as more nuanced decisions are considered, reflected by the perspectives given in Table II. Caregivers often prioritise factors such as treatment cost and the number of hospital visits, reflecting their broader roles in managing family responsibilities and logistical challenges.\u003c/p\u003e\u003cp\u003eThese findings are consistent with previous research indicating that caregivers may have differing expectations and priorities compared to patients, influenced by their caregiving responsibilities and the practical implications of treatment decisions [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. Open and empathetic communication between patients and caregivers, ensuring that both perspectives are acknowledged and integrated, while treatment decision making is necessary for the well-being of not only the patients but their close ones too.[\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e] Implementing structured communication strategies, such as values clarification exercises and decision aids, can enhance mutual understanding and agreement on treatment choices. These tools assist in elucidating individual preferences and aligning them with available medical options, thereby promoting shared decision-making. [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]\u003c/p\u003e\n\u003ch3\u003eImplications for Practice and Future Directions\u003c/h3\u003e\n\u003cp\u003eThese findings, along with the real-world narratives in Table II, underscore the importance of integrating both patient and caregiver perspectives into cancer care planning. For older patients or those dependent on others, caregivers play a crucial role in navigating the treatment journey. Healthcare providers should foster open conversations that align expectations and acknowledge real-world constraints.\u003c/p\u003e\u003cp\u003eClinician training in different aspects of cancer care and treatment could be beneficial to foster collaborative treatment decision-making. Patient-centred communication training in circumstances with patients at end-of-life requiring hospice care, palliative care referrals, cost-effective strategies, etc., could be helpful to address unknown concerns of the patient and the caregivers while decision making. When patients opt not to be fully informed about their treatment options or diagnosis and regimen, caregivers take on a significant role in determining treatment preferences. It is crucial to acknowledge the coping mechanisms of these caregivers and provide them with guidance, emphasising the importance of honest communication between them and the patient. Appropriate reasons behind each treatment preference should be explored, and a constructive communication approach should be utilised. Disclosure of treatment options must also navigate patients\u0026rsquo; readiness for information, emotional state, and trust in medical authority. Studies suggest that patients who are better informed tend to be more satisfied and make more value-aligned choices. [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e] As oncology increasingly moves toward personalisation, personalisation must include not only the tumour and biology but also the lived experiences and priorities of both the patient and their caregivers.\u003c/p\u003e\u003cp\u003eThe primary strengths of our study lie in the paired dyad methodology, the diversity of the population subsets and the significant sample size to address a notable gap in the literature. It represents one of the few studies focusing on different treatment priorities among cancer patients and their caregivers in India and globally. Further research stratifying the data based on cancer type, age at diagnosis, the consistency of the expectations over time, and geographical locations could be done for a deeper understanding of patient and caregiver expectations from cancer treatment. Some key messages from our study are summarised in Table III.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eOur data provides a unique documentation of treatment expectations from cancer patients and their respective caregivers. This provides a novel insight into the challenges faced by families fighting cancer and opens up new opportunities to improve communication and arrive at a treatment consensus in which all important stakeholders have the opportunity to be understood. Often, the healthcare team is unaware of the unique socioeconomic, economic, and logistical issues faced by families. Unless these are factored in while making the treatment plan, compliance and hence outcomes are likely to be compromised.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cul\u003e\n \u003cli\u003e\u003cstrong\u003eAB PM-JAY / PMJAY\u003c/strong\u003e – Ayushman Bharat Pradhan Mantri Jan Arogya Yojana\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eCT\u003c/strong\u003e – Computed Tomography\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eICU\u003c/strong\u003e – Intensive Care Unit\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eLMICs\u003c/strong\u003e – Low- and Middle-Income Countries\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eMRI\u003c/strong\u003e – Magnetic Resonance Imaging\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eQoL\u003c/strong\u003e – Quality of Life\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eSAARC\u003c/strong\u003e – South Asian Association for Regional Cooperation\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eUSG\u003c/strong\u003e – Ultrasonography\u003c/li\u003e\n\u003c/ul\u003e"},{"header":"Declarations","content":"\u003ch2\u003eCompeting Interests\u003c/h2\u003e\n\u003cp\u003eThe authors have no relevant financial or non-financial interests to disclose.\u003c/p\u003e\n\u003ch2\u003eEthics approval\u003c/h2\u003e\n\u003cp\u003eThis study was performed in accordance with the Declaration of Helsinki. The Integrated Academic Society of Clinical Oncology\u0026rsquo;s ethical board reviewed the study protocol and confirmed that formal ethical approval was not required, as it was an observational survey-based study without clinical intervention, or access to medical records.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to Participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipation was voluntary and informed consent was obtained from all participants.\u003c/p\u003e\n\u003ch2\u003eFunding\u003c/h2\u003e\n\u003cp\u003eThe authors declare that no funds, grants, or other support were received during the preparation of this manuscript.\u003c/p\u003e\n\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\n\u003cp\u003eAll authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Mansi Agrawal, Dr. Shaheed Shaik , Mohammad Orooj Azmi, , Dr. Sejal Grover, Uma Ashish Gupta, Harshita Agarwal , Urmila Gopinat, S. Harsha Varthini, Karma Jayeshkumar Patel, Keerthana Veluswami, Hritik Rasikkumar Salva, Aastha Gupta, Khooshi Bharat Patel, Mallika Mittal , Fatima Nadeem, Dr Archana Sameer Vinarkar , Varshitha KK, Parikh Purvish M. The first draft of the manuscript was written by Praveen Nandha Kumar Pitchan Velammal, Karthik Kanna Venkatesh , Anika Goel, Niharika Singh, Aarnav Pathak, Mansi Agrawal and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003ch2\u003eData Availability\u003c/h2\u003e\n\u003cp\u003eThe de-identified datasets underlying this article are available from the corresponding author upon reasonable request, subject to approval by the Integrated Academic Society of Clinical Oncology and in accordance with patient privacy regulations.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eRezaei M, Keyvanloo Shahrestanaki S, Mohammadzadeh R, et al (2024) Caregiving consequences in cancer family caregivers: a narrative review of qualitative studies. 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National Academies Press, Washington, DC. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.17226/18359\u003c/span\u003e\u003cspan address=\"10.17226/18359\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003e\u003cstrong\u003eTable I:\u003c/strong\u003e Agreement between choices preferred by patients and caregivers via Kappa values\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePreference Rank\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eKappa Statistic\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eInterpretation of Agreement\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFirst Preference\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e0.2742\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFair Agreement\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSecond Preference\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e0.230\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSlight to Fair Agreement\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eThird Preference\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e0.194\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSlight Agreement\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFourth Preference\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e0.158\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePoor to Slight Agreement\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFifth Preference\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e0.126\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePoor Agreement\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSixth Preference\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e0.087\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eVery Poor Agreement\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSeventh Preference\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e0.042\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNo Agreement\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable II:\u003c/strong\u003e Snapshots of representative narratives by caregivers: Real-world insights\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eS. No\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eCaregiver\u0026rsquo;s statement\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eInterpretation of their experience\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMy brother died of lung cancer in my arms\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eDisappointment with treatment and feeling of hopelessness, grief over their and the doctor\u0026rsquo;s efforts\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eI was denied leave to attend to my dying mother. I had to beg my head of the department for leave\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eIgnorance of the importance of the caregiver\u0026apos;s presence and involvement in attending to the patient. \u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eI lost my mother to ovarian cancer. On her last day, she asked for water, which I refused as she was to undergo surgery.\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eGuilt and emotional distress over medical decisions, feelings of helplessness and regret.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eI had to keep my sister in the ICU till both her daughters completed their exams (in a different city)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eThe emotional and ethical burden of prolonging life support for family reasons, balancing medical decisions with personal obligations.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eIn my final year of the medical oncology program, both my parents died of cancer\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eProfound personal loss while pursuing a medical career, potential emotional exhaustion and resilience challenges.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMy grandmother and my friend\u0026rsquo;s grandmother both died fighting colorectal carcinoma. My parents still wonder what harm they did that caused them such death, and what better treatment they could have endured.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eGuilt, helplessness, and unresolved questions about disease causation and adequacy of treatment. Possible influence of cultural and spiritual beliefs.\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eThe hospital doesn\u0026rsquo;t have MRI services. We have to pay out of our pocket for every imaging modality except for the CT scan and USG. Even the genomic sequencing tests cost heavily to us since Ayushman was not applicable in the independent laboratories. But still, we got everything done in hopes of the best available treatment.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFinancial burden and disparity in healthcare access, and determination to seek the best possible care despite economic hardships. Prominent in sections where health insurance is a big challenge and has various loopholes.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003ch3\u003eTable II:\u0026nbsp;Key Messages\u0026nbsp;\u003c/h3\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eKey Point\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eKey Message\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePatient-Caregiver Agreement\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eOften, there is an ill-understood dichotomy between the expectations of patients with cancer and their caregivers.\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eDivergence in Priorities\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eWhile the majority of cancer patients want the best chance of cure or longest survival, a significant number have other priorities ( better quality of life, fewer side effects, less out-of-pocket expenses, fewer visits to the hospital)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eEmotional and Ethical Burden\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eThe emotional struggles and ethical dilemmas faced by caregivers are ill understood. They have to balance the needs of the entire family, and an empathetic approach is necessary to understand the unstated reason behind the priorities they choose.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFinancial Considerations\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFinancial toxicity, while not the primary concern for most patients, exists under the surface. If not taken into consideration while finalising the treatment plan, there is a higher chance of treatment abandonment.\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eImplications for Policy change and improvement in healthcare infrastructure\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eGovernment insurance schemes now allow greater access to cancer treatment. \u0026ndash; especially to the vulnerable strata of society. Our survey results can provide the basis for further refinement in healthcare policy, \u0026nbsp;to truly make the treatment decision-making in sync with their expectations and circumstances.\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"cancer, treatment priorities, patient-caregiver dyad, shared decision-making, India, financial toxicity","lastPublishedDoi":"10.21203/rs.3.rs-7771114/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7771114/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003ePurpose\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCancer diagnosis profoundly impacts both patients and caregivers, with priorities shaped by medical, financial, and cultural factors. While patient-centred care has advanced, caregiver perspectives remain underexplored in India, where families strongly influence treatment decisions. This study examined: (1) treatment priorities of cancer patients and caregivers, (2) the degree of agreement between them, and (3) the role of financial responsibility in shaping choices.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA cross-sectional, multicentric survey was conducted among 373 patient–caregiver dyads from 17 medical colleges across 11 Indian states. Paired questionnaires were completed independently. Descriptive statistics summarised treatment preferences and financial contributions. Associations were tested using Chi-square/Fisher’s exact tests, correlations assessed with Spearman’s and Pearson’s coefficients, and concordance measured by kappa statistics.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003ePatients predominantly prioritised “best chance of cure” (56.9%) and “longest survival” (21.4%), whereas caregivers more frequently considered treatment costs and logistics. Concordance between patients and caregivers was fair for the first preference (Kappa = 0.2742) but declined to negligible levels for subsequent choices. Financial responsibility was not significantly associated with primary treatment preference (p = 0.294). Younger caregivers were more likely to contribute financially than older ones (ρ = -0.847, p \u0026lt; 0.01). Entry into clinical trials ranked lowest for both groups.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003ePatients and caregivers differ in their treatment priorities, with patients favouring survival outcomes and caregivers emphasising financial and practical considerations. These divergences highlight the importance of structured, empathetic communication to align expectations and support shared decision-making in cancer care.\u003c/p\u003e","manuscriptTitle":"Prospective survey amongst cancer patients and their respective caregivers regarding their expectations from and preferences regarding their treatment","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-11-17 10:40:38","doi":"10.21203/rs.3.rs-7771114/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"41e64a2b-ca74-4a87-9958-cf8fc6fc4a44","owner":[],"postedDate":"November 17th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-02-17T18:10:04+00:00","versionOfRecord":[],"versionCreatedAt":"2025-11-17 10:40:38","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7771114","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7771114","identity":"rs-7771114","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}