Patient, caregiver experiences in metastatic castration-resistant prostate cancer: insights from a multi-national survey

ABSTRACT

Objective

Patients with metastatic castration-resistant prostate cancer (mCRPC) and caregivers were surveyed to understand their attitudes, emotions, and experiences with the disease, its treatments, and their willingness to explore genetic testing.

Methods

A non-interventional, cross-sectional, online, quantitative-qualitative survey was conducted from 17-February to 9March 2022 among patients (≥21-years old) with mCRPC (diagnosis for ≥3-months) and caregivers.

Results

A total of 221 patients with mCRPC and 159 caregivers from USA, France, Germany, Canada, Spain, China, and Brazil were surveyed. mCRPC impacts mood, emotional and mental health (50–77%), sleep (48–68%), career goals (48–80%), and social activities (46–65%). Primary symptoms/side effects are urination issues (trouble urinating: 33–60%; painful/burning urination: 32–50%, frequent urination: 27–50%) and sexual dysfunction (lower libido: 10–57%), which impact romantic relationships. Caregivers often spouses or partners, provide practical, financial, and emotional support, averaging 11 hours/week of providing care. Patients face high treatment and pill burden (7–12 pills/day) and prefer simpler treatment regimens. Hope motivates patients and genetic testing is one such avenue of hope.

Conclusion

mCRPC is a life-changing diagnosis with physical, psychological, and financial burdens. By encouraging early genetic testing and fostering patient-centered conversation, HCPs can provide personalized care for optimized treatment outcomes in mCRPC.

Plain Language Summary

This study assessed the experiences of people living with metastatic castration-resistant prostate cancer (mCRPC) – a type of advanced prostate cancer that may not respond to certain treatments – and the caregivers who support such individuals. Researchers surveyed patients and caregivers in seven countries to better understand how mCRPC affects daily life and how they feel about treatments and genetic testing. The results showed that mCRPC has a major impact on many areas of life, including mood, mental health, sleep, career goals, and social activities. Common symptoms include problems with urination and trouble with sex, which also affect romantic relationships. Most caregivers were spouses or partners who provided both emotional and financial support, spending an average of 11 hours each week helping their loved ones. Patients take many pills daily and generally prefer simpler treatment routines. Despite the challenges, many patients remain hopeful, and some see genetic testing as a promising option for more personalized treatment. In conclusion, mCRPC affects physical health, mental well-being and finances of both patients and caregivers. Encouraging early genetic testing and supportive conversations between patients and healthcare providers may lead to better treatment experiences and outcomes.

1. Introduction

In 2022, prostate cancer (PC) was the fourth most commonly diagnosed cancer worldwide and the eighth leading cause of cancer-related deaths among men [1]. Locally advanced PC can progress and metastasize, and patients with metastatic PC (mPC) face physical (eg, urinary incontinence, bowel issues, erectile dysfunction, fatigue) and psychosocial (eg, depression, anxiety, fear, loneliness, isolation) challenges, which negatively impact quality of life (QoL) [2,3]. Hormonal therapies such as androgen deprivation therapy (ADT) are standard-of-care mPC treatments [4]. However, patients with mPC eventually stop responding to hormonal therapies and progress to metastatic castration-resistant PC (mCRPC) [5,6]. Despite advances in screening, genetic testing, and treatments, mCRPC is among the leading causes of cancer-related deaths among men worldwide [1]. Progression to mCRPC not only impacts the patient’s health and QoL, but it also places a significant burden on caregivers, who often face emotional, physical, and financial challenges, adding to the complex care needs of the patient [7].

For patients with PC, the use of genetic testing to guide personalized treatment plans for patients with certain mutations can improve patient management, decrease mortality, and enhance QoL [8]. Guidelines from several countries advocate for genetic testing in the screening, risk assessment, management, and treatment of mCRPC [9–14]. Homologous recombination repair (HRR) gene alterations, including Breast Cancer (BRCA) gene mutations, are present in up to 30% of patients with mPC [15–17], and patients with mCRPC and HRR alterations have significantly shorter life expectancy than patients without HRR alterations [18]. In addition, patients with metastatic castration-sensitive PC and HRR alterations progress to mCRPC significantly faster than patients without HRR alterations [19,20]. Patients with mCRPC who have tested positive for HRR alterations, especially BRCA alterations, are eligible for targeted treatment therapies with a novel class of treatments known as poly (ADP-ribose) polymerase (PARP) inhibitors [21–24].

Progression from loco-regional PC to mCRPC can take yearsand the symptoms can develop or worsen at metastasis, thereby negatively impacting patients’ health-related QoL [25,26]. Thus, it is important to understand how the patient feels, and the impact of disease state on the patient’s caregivers as well. However, metastatic patients are generally not surveyed owing to the sensitive and demanding nature of disease and treatments. While substantial focus has been on disease’s impact on the patient, it is equally important to consider the effects on the patient’s caregivers, who also experience substantial burdens as they provide critical support.

Therefore, we conducted an in-depth, quantitative-qualitative survey of patients with mCRPC and caregivers of patients with mCRPC to understand their attitudes, emotions, and experiences with PC and its treatments. We also aimed at understanding challenges at various points along the patient journey, with focus on mCRPC disease as well as their perceptions about and willingness to explore genetic testing.

2. Materials and methods

2.1. Study design

This non-interventional, cross-sectional, quantitative-qualitative, online survey of patients with mCRPC and caregivers of patients with mCRPC was conducted between February 17 and 9 March 2022 (Figure 1). Pearl Institutional Review Board reviewed and approved the study for exemption determination in accordance with FDA 21 CFR 56.104 and DHHS 45 CFR 46.104 regulations on 24 January 2022.

Figure 1.

Study design and data collection methodology.

2.2. Study population

Participants were recruited from seven countries (USA, France, Germany, Canada, Spain, China, and Brazil) (Figure 1). A broad cohort of patients with PC was screened to ascertain eligibility. Eligible patients were ≥21 years old with mPC (diagnosed at least 3 months ago) that is resistant to hormone treatment. Participating caregivers (≥21 years old) were eligible if they were nonprofessional (for example, a spouse, child, sibling, parent, or close friend of an eligible mCRPC patient [screening question CG1] and not employees of a professional caregiving organization [i.e., non-paid]). The age cutoff of 21 years was applied as a nominal screening criterion to ensure the inclusion of adult patients and caregivers across all countries in scope. Participants were made aware that responses were anonymous, and that they could withdraw at any time. All participants provided written informed consent before participation and received compensation (30 USD or the equivalent amount in local currency in non-US countries) for completing the 30-minute survey.

2.3. Survey and data collection

We employed an online survey approach, using an online panel (Schlesinger Group, now Sago) as our sample frame. This was done to balance feasibility (access to a robust sample) with budget considerations. The online panel comprised a broad cohort of patients with PC. This sample of patients were sent an e-mail by Sago inviting them to the online survey (via a link), where they were asked specific survey eligibility screening questions. These screening questions in the survey (see supplementary material) then determined eligible mCRPC patients (or caregivers of such patients). Only eligible patients or caregivers completed the full survey. Survey instructions along with an online survey link (URL) were sent by e-mail from Sago to the participants. The survey was self-administered, with respondents self-identifying or identifying the patient they care for as having mCRPC. The survey was translated into local languages and consisted of closed-ended questions for quantitative analysis and creative projective techniques for qualitative analysis. Before commencing the main fieldwork, a fourinterview pretest was carried out in the USA to verify the questionnaire’s intended functionality. The pretests were conducted as 45–60-minute moderated webcam interviews. Feedback from these sessions was used to refine and improve the final survey instrument (see supplementary material). For patient-focused questions, responses were provided by patients or by caregivers on their behalf. Caregiver-focused questions were answered solely by caregivers.

Confidentiality of patient records and individual patient identity was maintained at all times. Respondents’ identities were not known to researchers and buzzback did not collect any personal information (only IP address). At no time during the study did the sponsor receive patient identifying information except when it is required by regulations in case of reporting adverse events. All study reports developed for the sponsor contained aggregate data only and did not identify individual patients or caregivers.

2.4. Data analysis

The final survey instrument was translated into local languages in each market by buzzback’s professional translation partner, using human translation. Data was aggregated for analysis and no personally identifiable information on respondents was collected. Quality control checks were conducted prior to analysis. These checks include visual inspection of open questions (e.g., copied and pasted or nonsensical answers) checking for duplicate IP addresses, and logic checks to identify fraudulent responses to closed-ended questions (e.g., giving patterned or indiscriminate responses). In total n = 6 respondents were removed during quality control, prior to analysis.

Closed-ended data were analyzed by calculating the percentages of responses to each question. Data from open‐ended responses were coded manually by human coders using Microsoft Excel and analyzed by categorizing responses into codes representing themes that emerged in responses and then calculating the percentage of respondents whose responses fell into each theme. Analyses were conducted to understand how responses were affected by age, race, socioeconomic status, and education status of patients. Descriptive statistics were used, and comparisons were made with statistical significance testing (z-test) at the 95% confidence level, where sample size permitted.

3. Results

A total of 3977 patients with PC were screened to identify eligible mCRPC patients. Within the study, data from 380 eligible participants (patients, n = 221; caregivers, n = 159) who completed the survey were analyzed (Supplementary Table S1). The study population had a mean age of 54 years for patients and 41 years for caregivers (55% male). The age range of patients surveyed was 26–86 years, and two-thirds (65%) were aged 50+ years, and 17% were aged 65+ years. All patients had mCRPC for ≥3 months at enrollment: 53% were initially diagnosed with mPC (vs localized, 47%) and 48% had mPC for >1 year.

3.1. Attitudes and experiences of patients with mCRPC

Patients’ attitudes about PC vary across countries, though patients consistently report trying to maintain as much of a normal life as possible (74% to 88% of patients across countries) and worrying about how their cancer diagnosis impacts others (e.g., family and friends, and caregivers) (70% to 100%) (Table 1). mCRPC greatly impacts various aspects of a patient’s life, including mood, mental health (50% to 77%), quality of sleep (48% to 68%), career goals (48% to 80%), leisure activities/socializing (46% to 65%) and romantic relationships (45% to 65%) (Table 1). For many patients (52% to 73%), ≥9 hours per week were devoted to mCRPC care. The most common disease-related symptoms/treatment-related side effects are issues with urination (trouble urinating: 33% to 60%; painful or burning urination: 28% to 50%, frequent urination: 27% to 50%), loss of appetite (21% to 67%), difficulty getting/maintaining erections (14% to 33%), and lower libido (10% to 57%) (Table 2). However, the myriad of symptoms/side effects are expansive (Figure 2(a) is an example for the USA). One in three patients experiences fatigue, which is persistent and happens during day-to-day activities (Figure 2(b)). Symptoms/side effects vary by age; 50% of 51- to 60-year-olds experience trouble urinating, compared with 36% of 21- to 50-year-olds. Among younger patients, the top three life impacts of mCRPC were negative mental health (14% to 43% across countries in younger patients; not reported among older patients), insomnia (33% [21- to 50-year-olds] vs 21% [51- to 60-year-olds]) and fatigue during rigorous activities (52% [21- to 50-year-olds] vs 20% [70+ year olds]). For most patients (>75%), employment status changed post-mCRPC diagnosis (Figure 2(c)). Across countries, 68% to 88% of patients worked outside the home pre-diagnosis. After diagnosis, 33% to 68% of patients reduced hours, 21% to 42% stopped working completely, ≤11% retired as planned, and 19% to 53% made other changes to work (such as working from home or changing roles/responsibilities); only ≤ 5% of patients continued working normally. Among those who reduced work hours, 67% to 83% reduced their hours by half or more.

Table 1.

Participants’ attitudes about prostate cancer and the impact of prostate cancer on their daily lives across each country (top 5).

Table 2.

Patients’ most impactful symptoms/side effects as reported by participants across each country.

Figure 2.

Myriad symptoms/side effects experienced by patients with mCRPC in the United States (a), types of fatigue experienced by patients with mCRPC (b), and the impact of mCRPC on the patient’s work status (c).

a) Q5. Looking at the list below, which of the following do you/does the patient currently experience?//Q6. For each of the things you currently experience/the patient currently experiences please tell us how severely you experience/the patient experiences these, at their worst. US, n = 66; (b) Q8. You mentioned you currently experience/the patient currently experiences fatigue, which of the following do you/the patient specifically experience? All patients who experienced fatigue, n = 110; (c) US, n = 66; Canada, n = 51; France, n = 50; Germany, n = 55; Spain, n = 50; Brazil, n = 30; China, n = 78. Q10b. Before being diagnosed with metastatic prostate cancer how many hours a week did you work outside/did the patient work outside the home?/Q11. Since being diagnosed with metastatic prostate cancer have you/has the patient … ?: US, n = 46; Canada, n = 40; France, n = 44; Germany, n = 44; Spain, n = 34; Brazil, n = 26; China, n = 57. Q12. How much did you/did the patient reduce your working/their working hours since being diagnosed? US, n = 22; Canada, n = 22; France, n = 20; Germany, n = 16; Spain, n = 23; Brazil, n = 9; China, n = 19. *Made other changes to work (such as working from home or changing role/responsibilities).

Patients consider their treatment of mCRPC a substantial burden (Table 3). Many patients find the frequency of medical visits (65% to 84%), and the time required for medication (61% to 72%) to be burdensome. Most patients try to stay informed about available treatments (>65% of patients across all countries). However, 41% to 67% of patients rely on the support from their caregivers to manage their medications, and 65% to 83% of patients rely on the doctor to choose the medication. Patients receiving treatment for mCRPC also have a high pill burden (Table 3). Patients’ concerns with pill-based medications include pill size and shape, number, frequency/timing, and potential for drug–drug interactions (Table 3). Patients with mCRPC report taking seven to twelve pills per day for their treatment and other health conditions (Table 3). Thirty-five to 62% percent of patients report having difficulty taking or swallowing pills. Patients prefer medications that can be taken orally at home (70% to 92%) or injections that can be self-administered or caregiver-administered at home (55% to 82%) over other options provided in healthcare settings. Similarly, taking two (77% to 91%) or four pills (59% to 86%) in the morning is preferred over twice-daily administration or taking more pills once-daily.

Table 3.

Patients’ attitudes toward medications, pill-based medications, and number of pills per day across each country.

Patients’ top expected treatment outcomes are extension of life for as long as possible, improvement or maintenance of their day-to-day quality of life, and maintenance of mobility, strength, and endurance (Table 4). Patients also expect minimal long-term side effects and for their PC treatment to minimize pain. Finally, patients expect minimal short-term side effects and ease of administration from their treatment.

Table 4.

Participants’ top key expected treatment outcomes across each country.

3.2. Attitudes and experiences of caregivers

Caregivers’ attitudes (n = 159) about providing care for patients with mCRPC vary across countries, although caregivers consistently report wishing they had more support/resources (82%) and could do more (80%), having felt ill-prepared for the task (63%), and being worried about the impact of caregiving on their own lives (67%) (Supplementary Table S1). Caregivers provide patients with a broad range of practical, financial, and emotional support; 60% of caregivers in the study have been caring for ≥1 year. On average, caregivers spend 11 hours per week caring for patients with mCRPC (Supplementary Table S1). For the majority of caregivers (58% to 60%), providing care affects their finances (60%), sleep (60%), energy level (59%), mood/mental health (58%), and overall day-to-day life (58%). More than half of caregivers (53%) report an impact on their ability to work. Among the 79% of caregivers who worked outside the home before their patient’s mCRPC diagnosis, 40% reduced their working hours, 13% stopped working completely, 3% retired as planned, and 43% made other changes; only 15% continued working normally post-diagnosis (Supplementary Table S1). Among those who reduced work hours, 64% reduced their hours by half or more.

3.3. Healthcare provider (HCP) and wider support experiences

Patients with mCRPC report seeing medical oncologists, urologists, and radiation oncologists the most among all HCPs (Figure 3(a)), and patient satisfaction with these providers is very high across all countries (Figure 3(b)). Patients also receive support from family/friends and doctors/nurses, and – to a lesser extent – other cancer patients (Figure 4(a)). Overall, roughly equal percentages of patients report needing more support or getting the right amount of support (Figure 4(b)).

Figure 3.

Patients’ go-to healthcare professionals (a) and satisfaction with their go-to healthcare professionals (b).

(a) Q24. What type of healthcare providers do you/does the patient see for your prostate cancer?//Q25. Who do you/does the patient consider your/their “go-to” (main) healthcare provider for your/their prostate cancer? China, n = 78; Brazil, n = 30; Spain, n = 50; Germany, n = 55; France, n = 50; Canada, n = 51; US, n = 66; (b) Q26. Overall, how satisfied are you/is the patient with your/their “go-to” Provider? N = 380 (China, n = 78; Brazil, n = 30; Spain, n = 50; Germany, n = 55; France, n = 50; Canada, n = 51; US, n = 66).

Figure 4.

Patients’ sources of support (a) and perceived levels of support (b).

(a) and (b): Q28. Overall, how much support or assistance are you/is the patient currently getting to help manage your/their prostate cancer from each of the following?//Q29. How do you/does the patient feel about the level of support you/they get for your/their prostate cancer from each of the following? US, n = 66; Canada, n = 51; France, n = 50; Germany, n = 55; Spain, n = 50; Brazil, n = 30; China, n = 78. Note: responses to Q29 are not mutually exclusive; therefore, the percentages sum to more than 100%.

Most patients (76% to 94%) rely on spouses or partners – rather than paid caregivers, parents/guardians, friends, children, or other relatives – to help manage their mCRPC. Patients also frequently rely on cancer charities (28% to 63%), social media (33% to 60%), and virtual support groups (18% to 38%) for support during their mCRPC journey.

3.4. Awareness of and willingness to explore genetic testing

Most patients (>65%) are aware of genetic tests such as germline testing, tumor testing, BRCA gene mutation testing, and HRR gene mutation testing (Figure 5(a)). Approximately half (48%) of patients know they have a mutation but do not know which one or are unsure of their mutation status. When asked specifically about their mutation status, 18% to 35% of patients across countries report an HRR mutation, and 17% to 41% report BRCA mutation.

Figure 5.

Patients’ awareness/familiarity of genetic testing across countries (a) willingness to explore genetic testing (b) patients’ needs regarding additional information about genetic/genomic or biomarker testing (c) patients’ knowledge about biomarker testing (D) and patients’ attitudes about biomarker testing (e).

(a) Q35. Which of the following best applies to you and your/the patient and their prostate cancer?//Q34. What is your/the patient’s experience with each of the following genetic/genomic biomarker testing options for prostate cancer? US, n = 66; Canada, n = 51; France, n = 50; Germany, n = 55; Spain, n = 50; Brazil, n = 30; China, n = 78. Q37a: US, n = 62. Canada, n = 50; France, n = 38; Germany, n = 37; Spain, n = 37; Brazil, n = 24; China, n = 61; (b) Q37a: If the following type of genetic/genomic biomarker testing was offered to you/the patient how interested would you/the patient be in exploring this further? US, n = 62; Canada, n = 50; France, n = 38; Germany, n = 37; Spain, n = 37; Brazil, n = 24; China, n = 61; (c) Q40. What other information would you like to know about genetic/genomic or biomarker testing? (d) Q38: Thinking about biomarker testing specifically, e.g., for HRR or BRCA gene mutation, in your own words, why is this done and what are the implications? US, n = 50; Canada, n = 43; France, n = 41; Germany, n = 45; Spain, n = 37; Brazil, n = 29; China, n = 76; (e) Q39. How much do you agree or disagree with each of the following about biomarker testing? US, n = 66; Canada, n = 51; France, n = 50; Germany, n = 55; Spain, n = 50; Brazil, n = 30; China, n = 79.

Willingness to explore genetic and biomarker testing also differs across countries, with the highest rates of willingness to be tested in France (58–74%) and lowest in China (31–51%) (Figure 5(b)). In general, patients have a high interest in germline testing (51–74%). The most common reasons for the high interest in germline testing are to mitigate hereditary risks, explore possibilities for novel treatments, and foster hope for a potential cure. Most patients (80%), however, want to know more about genetic testing (i.e., implications for their family members, implications for treatment, side effects and/or risks, and cost) (Figure 5(c)).

For 59% to 84% of patients, biomarker testing gives them hope; however, 56% to 82% need more information before getting tested (Figure 5(d)). Approximately two thirds (55% to 88%) of patients feel biomarker testing is their last hope for a new treatment option. When probed about their knowledge of biomarker testing, 50% of patients say it is used to aid treatment and recovery, and 35% say it can be used to dissect the root cause and heredity of their cancer (Figure 5(e)). Overall, upper- or middle-socioeconomic groups are more positive and open to genetic testing than lower-socioeconomic groups; younger patients (21–50 years old) are more open to genetic testing than older patients (51–60 years old). Additionally, Black/African patients are more likely to report feelings of confusion about genetic testing than Caucasians, and Asian patients (25% vs 5%) and have more negative feelings about testing (generally related to pain and a sense of being at the end of their lives and a general distrust toward the healthcare system) than other ethnicity groups (25% vs 5% to 15%).

4. Discussion

In this quantitative-qualitative study, we explored the attitudes, emotions, and treatment experiences of patients with mCRPC and caregivers of patients with mCRPC, along with patients’ perceptions about and willingness to explore genetic testing. To our knowledge, this study is the first to capture a full range of information from both patients and caregivers along their journey with mCRPC.

Results from the quantitative portion of the study indicate that mCRPC impacts patients physically, psychologically, socially, and financially. Patients’ mood, emotional and mental health, sleep quality, career goals, and overall day-to-day life are impacted, as are their romantic relationships. Patients with mCRPC report substantial symptoms, including pain, fatigue or lack of energy, and sexual dysfunction. The severity and distress associated with these symptoms can significantly impair daily activities and overall well-being [27]. As expected, patients with mCRPC strive to maintain a normal life and to live as long as possible. mCRPC treatment is known to impact men’s ability to work and influences their career trajectories and retirement decisions. Given the younger demographic of patients included in this study, who were primarily of working age, respondents reported a substantial impact of mCRPC on their ability to work, including changes in roles and responsibilities, reduced working hours, and the possibility of quitting or early retirement. A scoping review that evaluated work outcomes after PC treatment and return to work considerations reported that men often experience work absenteeism due to recovery periods and treatment side effects, with some men facing challenges in resuming their previous roles [28]. Patients rely mainly on support from spouses and partners. A recent survey-based study highlights the crucial role of spouses and partners in supporting patients with PC, particularly in emotional, practical, and informational aspects. Research shows that partners significantly impact patients’ psychological well-being, daily life, and caregiving needs, with ongoing emotional distress often affecting both patients and their spouses long after treatment [29].

HCPs play a pivotal role in the patient’s treatment journey. Patients perceive their providers as caring and protective figures who solve problems and provide optimal treatment. In addition to providing therapy options, HCPs can enhance the care and overall wellbeing of patients with mCRPC by taking a holistic approach and understanding and addressing the emotional and mental impacts of the disease in the treatment decision-making process. A prospective interview study involving 17 men with mCRPC revealed that patients’ treatment decisions were significantly influenced by their emotional well-being and the quality of communication with their HCPs [30]. Shared decision-making, characterized by collaborative communication between patients and HCPs, has been associated with higher treatment satisfaction among patients with mCRPC [31]. The present study provides several insights into the treatment and administrative burden of the mCRPC journey (i.e., office visits, pill burden, and other treatment-related activities). Being cognizant of time commitments related to patient care, streamlining processes, and offering simpler oral treatment regimens are strategies that HCPs and pharmaceutical manufacturers can use to reduce patient and caregiver burden.

Caring for patients with mCRPC impacts caregivers physically, psychologically, socially, and financially. Caregivers often experience fatigue, sleep disturbances, and physical strain due to the demands of caregiving. Caregivers of patients with mCRPC have been known to spend an average of 28.9 hours per week providing care, which can lead to physical exhaustion [32]. Furthermore, caregivers may often face social isolation due to the time and energy devoted to caregiving responsibilities [33]. Caregivers wish they had more support and resources that would enhance their ability to care for patients and alleviate the impact of caregiving on their own lives. A holistic treatment approach that focuses on the patient-caregiver dyad, rather than individual patients, and includes the psychosocial well-being of caregivers may improve the experience of caregivers. Such dyadic interactions have been shown to reduce psychological distress in both cancer patients and their caregivers. These interactions address the emotional needs of both, leading to improved mental health outcomes [7].

Uptake of genetic testing among patients with cancers is constrained by limited patient friendly information, and low general public awareness and availability of testing. The decision to test is complex, influenced by a multitude of interacting patient, healthcare system and HCP factors [34,35]. In this study, patients with mCRPC are driven by hope and exhibit high awareness and willingness to explore genetic testing, which they view as an avenue of hope for better treatment. However, additional information and emotional support are necessary to enable patients to make informed decisions about the benefits and implications of genetic testing for their family members, treatment options, side effects and/or risks, and costs. Our findings align with other studies highlighting barriers to genetic testing, including lack of awareness, knowledge gaps, and psychological concerns, and a general uncertainty about the usefulness and implications of genetic testing among those with some awareness [36–38]. As mentioned, up to 30% of patients with mCRPC have HRR gene alterations, including BRCA mutations [15–17], and many patients may benefit from targeted treatment with PARP inhibitors [39], which are available in some of the countries included in the analysis. However, this study focuses on patient and caregiver attitudes and emotions throughout the treatment journey, rather than on any specific therapy. Therefore, HCPs have a unique opportunity to educate patients who are unaware of the different types of genetic testing, ask about and address patients’ concerns about testing, mitigate emotional distress about testing, and encourage testing to aid in treatment decision-making. By integrating genetic testing earlier in the PC journey, HCPs can provide personalized care and optimal treatment outcomes to patients with mCRPC.

The study’s strengths lie in the number of patients surveyed from seven different countries across various racial and cultural backgrounds, the diversity of patient disease experiences, the inclusion of both patients and caregivers, and the mixed-methods approach of the survey questions. While the study sample size may appear small given the intercontinental design of the survey, we believe this represents a meaningful first step toward understanding patient and caregiver experiences with mCRPC – an area with limited existing research to date. Although the focus of the study was to explore patient experiences during mCRPC disease, our insights ask patients about their experience since diagnosis, 47% of which started off in the localized setting. Limitations of the study include the use of an asynchronous survey format that did not allow for follow-up questions and a retrospective design that relied on participants’ memory, which may have introduced recall bias. Also, the disease status and other survey eligibility criteria were based on self-reporting. Despite these limitations, only participants who provided responses that passed quality control checks (visual inspection for duplicate IP addresses, and logic checks) were included in the final data set. Due to the screening criteria for mCRPC, only 9.6% of the screened patients with PC qualified and participated. Additionally, the sample size for each country was limited and planning for larger per country sample sizes would improve diversity and representativeness in future surveys. Notably, a sample size of 50 is commonly considered an acceptable quantitative base for comparison in commercial insights research, although the standards may be different in academic research. The current analysis does not include formal country-level comparisons; rather, it reports results by country and highlights any distinct differences observed in individual countries.

Furthermore, due to the online nature of this survey, less than 1/5^th were aged 65 years or above, which is lower than the typical mean age of patients with advanced PC seen in epidemiological and clinical studies, introducing a selection bias, toward a younger patient sample profile [40–43]. Thus, the study represents a less well studied younger population (mean age: 54 years) of mCRPC, providing a unique perspective on factors such as work and lifestyle impacts, while also representing older patients (17% of patients were 65+ years old). A precisely targeted recruitment strategy targeting those over 65 years of age could be achieved in future studies by screening for eligibility via local urologists and care teams.

5. Conclusion

Patients and caregivers of patients with mCRPC are impacted physically, psychosocially, and financially by diagnosis and treatment of this disease. Patients with mCRPC want to maintain as normal a life as possible, and caregivers want to provide support to the patient along their treatment journey. HCPs can facilitate a positive treatment experience for patients and their caregivers by taking a holistic approach to care that encompasses the patient-caregiver dyad. Critical steps include understanding and attending to patients’ mCRPC-related symptoms and treatment-related side effects and complications, being cognizant of time commitments, streamlining processes, and offering simple oral treatment regimens. Additionally, by recognizing and addressing questions and concerns about genetic testing and integrating testing into routine clinical practice, HCPs can deliver personalized care to patients with mCRPC and optimize their treatment outcomes.

Funding Statement

This study was supported by Johnson & Johnson.

Article highlights

Introduction

• Metastatic castration-resistant prostate cancer (mCRPC) affects quality of life, imposing physical, emotional, and financial burdens for both patients and caregivers.

• Genetic testing helps identify patients with certain genetic mutations, who may benefit from treatment with targeted therapies.

Aims

• This study explores real-world experiences of patients and caregivers, including their perceptions on treatment challenges and willingness to consider genetic testing.

Methodology

• A cross-sectional, online survey was conducted between February 17 and March 9, 2022, among patients with mCRPC and caregivers across seven countries, using a structured, mixed-methods questionnaire.

• Participants were screened for eligibility, provided informed consent, and completed a 30-minute self-administered survey; quantitative data were analyzed descriptively, while open-ended responses were thematically coded for qualitative insights.

Results

• mCRPC significantly affects patients’ quality of life, with high prevalence of emotional distress, sleep disturbances, career disruption, and sexual and urinary dysfunction.

• Caregivers, predominantly spouses or partners, provide substantial emotional and financial support, averaging 11 hours of care per week.

• Despite high treatment burden, patients express interest in genetic testing as a means to access targeted therapies and maintain hope for improved outcomes.

Conclusions

• mCRPC imposes substantial physical, psychosocial, and financial burdens on both patients and caregivers; addressing these requires a holistic, patient-caregiver-centered approach by healthcare providers.

• Integrating genetic testing into routine care and offering simplified treatment regimens can support personalized care and improve outcomes for patients with mCRPC.

Author contribution

All authors: Conceptualization, Methodology, Writing, Reviewing, Editing and Approving. Rob Seebold, Jonathan Weiser and Matthew Pagano: Methodology and Formal Analysis.

Disclosure statement

Katie Pascoe, Ruhee Jain, Emma Smith, Andrea Stevens, Neerav Monga, and Katherine Bevans are employees of Johnson & Johnson and may hold company stock and/or stock options. Rob Seebold, Jonathan Weiser, and Matthew Pagano are employees of buzzback, LLC. Writing assistance was provided by Salgo Merin Ricki Elenjikamalil, PhD (SIRO Clinpharm Pvt. Ltd., India), Priya Ganpathy, MPH, CMPP (SIRO Clinpharm UK Ltd.) and Maribeth Bogush, PhD (InSeption Group) funded by Johnson & Johnson. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

Ethical disclosure statement

This survey-based study was conducted in accordance with established ethical guidelines. Pearl Institutional Review Board reviewed the study and approved the study for exemption determination in accordance with FDA 21 CFR 56.104 and DHHS 45 CFR 46.104 regulations on January 24, 2022. All participants were fully informed about the purpose and aims of the research, including any potential risks associated with their participation. Participants were made aware that responses were anonymous, and that they could withdraw at any time. All participants provided written informed consent before participation and received compensation for completing the 30-minute survey.

Data availability statement

The data sharing policy of Johnson & Johnson is available at Transparency of Clinical Trial Data https://innovativemedicine.jnj.com/our-innovation/clinical-trials/transparency. As noted on this site, requests for access to the study data can be submitted through Yale Open Data Access [YODA] Project site at http://yoda.yale.edu.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/14796694.2025.2510890