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)

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.

A total of 373 paired patients and their caregivers participated in this survey from 17 medical colleges in 11 states across India.

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.

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.

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).

Figure II: Sankey 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)

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.

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].

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]

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.

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.