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Original research
Healthcare professionals roles in pancreatic cancer care: patient and family views and preferences
  1. Fumika Horinuki1,
  2. Yumiko Saito1,
  3. Chikako Yamaki1,
  4. Yasushi Toh2 and
  5. Tomoko Takayama3
  1. 1 Institute for Cancer Control, National Cancer Center Japan, Chuo-ku, Tokyo, Japan
  2. 2 National Hospital Organization Kyushu Cancer Center, Fukuoka, Japan
  3. 3 Shizuoka Graduate University of Public Health, Shizuoka, Japan
  1. Correspondence to Dr Fumika Horinuki, Institute for Cancer Control, National Cancer Center Japan, Chuo-ku, Tokyo, Japan; fhorinuk{at}ncc.go.jp

Abstract

Objectives This study explored the information needs and requirements of patients with pancreatic cancer (PPCs) and their families through patients’ and families’ views and preferences (PVPs) collected by healthcare professionals (HCPs) and to identify differences in PVPs by profession.

Methods We conducted an anonymous web-based survey of HCPs in cancer care hospitals in Japan, posing specific questions from patients or families regarding pancreatic cancer within the past year. We qualitatively analysed the data and classified them into several categories according to their content. We also compared the percentage of PVPs in each category in the medical profession.

Results We collected 893 PVPs from 353 HCPs and classified them into 15 topics within 5 categories: (1) treatment and care, (2) characteristics of the disease, (3) daily life, (4) feelings of patients or families and (5) communication with HCPs/peer support information. Physicians, nurses and pharmacists received mainly PVPs in categories 1 and 2. Characteristically, cancer counsellors received PVPs in all categories, with higher frequencies for categories 3–5.

Conclusions PPCs and families have diverse PVPs, and appear to select different HCPs for consultation based on their specific concerns. Each HCP should recognise that their individual experience may be insufficient in understanding the full spectrum of PVPs; however, cancer counsellors tend to have a broader awareness of them. To support PPCs and families, HCPs should appropriately collaborate with each other, considering that HCPs like cancer counsellors who do not provide direct treatment still play an important role in providing holistic support.

  • Pancreatic
  • Communication
  • Patient Care Team
  • Supportive care

https://doi.org/10.1136/spcare-2024-004921

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    WHAT IS ALREADY KNOWN ON THIS TOPIC

    • Patients with pancreatic cancer (PPCs) have unmet needs and lower quality of life compared with patients with other forms of cancer.

    • Understanding patients’ and families’ care needs is essential, but conducting surveys of PPCs and their families is physically, psychologically and ethically challenging; this is because, at the time of diagnosis, pancreatic cancer is usually advanced and has a low 5-year survival rate.

    WHAT THIS STUDY ADDS

    • Through the collection and analysis of questions posed to healthcare professionals (HCPs) based on patients’ and families’ views and preferences (PVPs) from PPCs and their families, it became clear that patients and their families were concerned about a diverse range of aspects, from the disease and treatment to how they spend their final days.

    • Depending on the medical profession of the HCPs, there were differences in the content of the PVPs. The HCPs directly involved in treatment and care, like physicians, nurses and pharmacists, mainly received PVPs related to the disease and treatment. In contrast, the HCPs who did not provide direct treatment or care (ie, independent HCPs), like cancer counsellors in this study, received a wide range of PVPs, including daily life, feelings and communication with HCPs.

    • The role of independent HCPs who do not provide direct treatment or care is critical for patients with pancreatic cancer under difficult conditions.

    HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

    • Our findings suggest that PPCs and their families have different PVPs throughout the dynamic disease trajectory, leading them to seek consultations from various medical professionals accordingly.

    • The quality of treatment and care for PPCs and their families may be improved when all HCPs understand the limitations of obtaining correct PVPs, recognise the role of each medical profession in addressing patient needs, create an environment where patients can consult with independent HCPs who are not directly involved in the treatment and care, such as cancer counsellors, when needed, and share information with the patients and their families as appropriate.

    Introduction

    Pancreatic cancer is ranked as a disease with the 12th estimated age-standardised incidence rate and the 7th highest cause of cancer-estimated age-standardised mortality rate globally.1 In Japan, the number of people diagnosed with pancreatic cancer is about 44 0002; approximately, 38 000 people die each year,3 and the 5-year relative survival rate is 8.5%.4 Thus, pancreatic cancer is one of the most severe cancers because it is difficult to diagnose them in the early stages; most cases present late, with either locally advanced or metastatic disease.5

    Owing to these disease characteristics, patients with pancreatic cancer (PPCs) and their families may feel agitated regarding diagnosis and the future disease trajectory. Therefore, conducting surveys of PPCs and their families immediately after diagnosis and during treatment is physically and psychologically burdensome and ethically problematic. However, it is essential to support PPCs and their families, who must make decisions regarding treatment and recuperation in the face of crises according to their individual circumstances. Thus, reports on unmet supportive care needs,6 7 important individual questions immediately after diagnosis8 and the trajectory of information seeking and decision-making in PPCs9 are gradually increasing. However, particularly in Japan, few surveys of PPCs have been conducted, except for a few qualitative studies focusing on patients’ thoughts and feelings.10 11 As a preliminary step towards providing information and support tailored to individual situations and needs, it is necessary to obtain an overview of the questions and concerns of PPCs and their families.

    Since healthcare professionals (HCPs) are asked various questions in their daily practice by patients and their families, collecting questions and inquiries asked by patients and their families targeting HCPs can reveal many patient and family situations and needs, although indirectly. Hence, we previously developed a new system to obtain patients’ and their families’ views and preferences (PVPs), including information needs regarding the disease and treatment, as expressed to HCPs of various specialties. In other words, surveying HCPs regarding questions and concerns of patients and their families and collecting and analysing them is an efficient alternative way to understand the situations and needs of patients and their families. We attempted to identify symptoms such as lymphedema, numbness, dysuria and other matters related to sexuality by collecting PVPs data from HCPs, including cancer counsellors, to consider support for the person concerned.12

    In Japan, cancer care hospitals designated by the government have the Cancer Information and Support Centers (CISC) staffed by cancer counsellors. Cancer counsellors are HCPs, and most hold Japanese national licenses as social workers or nurses and are trained in cancer counselling.13 14 Most cancer counsellors are assigned to an independent section from direct treatment, such as physicians, nurses and other professionals directly involved in treatment; their role is to support patients in addressing the root causes of their difficulties and operate independently.15

    Therefore, this study aimed to reveal the questions and concerns of PPCs by collecting PVPs through HCPs including cancer counsellors, who are not directly involved in treatment. Moreover, it aimed to examine the type of support necessary for PVPs related to pancreatic cancer from patients and their families, categorise them according to their content, determine the percentage of PVPs collected according to the content of each profession, and examine the content of support, identify differences in the support required according to each profession, and assess the possibility of professional collaboration.

    Methods

    Data collection

    We conducted web-based, anonymous and self-administered surveys from July to September 2019. HCPs were recruited through two groups: the Japanese Association of Clinical Cancer Centers, of which 32 partner hospitals are members,16 and the CISC, located in 436 cancer care hospitals designated by the government in Japan.17 We asked whether the medical staff had received questions and inquiries regarding pancreatic cancer in the past year. Furthermore, we asked the medical staff, if possible, to provide open-ended descriptions of the questions they received.12

    Data analysis

    The patients/families’ statements, as reported by the medical staff, were qualitatively analysed using the content analysis technique to classify them according to content, and counted after categorisation.18 If a statement included two or more different meanings or contents, it was counted separately. Analyses were performed independently by two researchers (FH and YS). If there was a disagreement in the categorisation between FH and YS, they discussed and chose the more appropriate category with mutual agreement. After categorisation, we calculated the percentage of PVPs in each category based on the number of respondents in the medical profession.

    Ethical considerations

    According to the ethical guidelines for medical and health research involving human subjects in Japan, approval from an ethical committee was not needed for this type of study.19 Additionally, the Medical Ethical Committee of the National Cancer Center, Tokyo, Japan, ruled that no formal ethical approval was required for this study (reference number 6000-017). We provided medical personnel with written information about this study; voluntary responses to the questionnaire were considered consent to participate.

    Results

    Characteristics of respondents and the number of PVPs by medical profession

    In total, 353 HCPs provided 893 PVPs. Table 1 shows the total number of PVPs and the average number of responses per respondent by medical profession. HCPs comprised a wide variety of medical professionals, including physicians, nurses, pharmacists, cancer counsellors and others.

    View this table:
    Table 1

    Number of respondents and PVPs by medical profession

    The average number of PVPs per person was 2.5 for physicians, 2.0 for nurses and 1.6 for pharmacists. Cancer counsellors recruited through the CISC represented about 45% of the respondents, and the average number of PVP responses per person was 3.3, which is higher than the other professions.

    PVPs regarding pancreatic cancer collected by HCPs

    PVPs were classified into 15 topics within 5 categories (table 2). The categories according to the total number of PVPs were as follows: (1) treatment and care, (2) characteristics of the disease, (3) daily life, (4) feelings of patients or families and (5) communication with HCPs/peer support information. Table 2 shows examples of the open-ended responses for each topic. The text in italics below shows the open-ended responses that characterise the situations and feelings of the PPCs on several topics.

    View this table:
    Table 2

    Categories and examples of patients’ and families’ views and preferences regarding pancreatic cancer

    Category 1 was the largest, with ‘treatment’ being the most common topic. Open-ended responses indicated that PPCs continue to search for possible treatments:

    I have stage IV pancreatic cancer and received chemotherapy, but it was ineffective, and there were no further treatment options. I am still in good physical condition and would like to find out if there is any treatment.

    In category 1, ‘the possibility of applying non-standard treatments’, such as immunotherapy and genomic medicine, was also one of the topics:

    I received curative operation for pancreatic cancer and plan to have preventive chemotherapy to prevent a recurrence. Still, if it does recur, the prognosis for pancreatic cancer is poor, so I would like to know if there is any treatment other than the standard drugs that could somehow reduce the risk of recurrence as much as possible. I want a genomic panel test, even at my own expense.

    In category 2, “prognosis and disease process” was the most prominent topic. PPCs seemed to be trying to understand their actual situation:

    What is the prognosis?

    Is there a chance of a cure?

    In category 3, ‘future recuperation with under treatment’ was the most prominent topic. PPCs wanted information regarding home care in anticipation of the future:

    Visiting the hospital is becoming difficult, so I need to know about doctors and nurses who can see me at home.

    In category 4, ‘anxiety, depression, or confusion’ and ‘way of communication as a family’ were equally common topics. PPCs were confused after diagnosis:

    I have been diagnosed and told that my prognosis is not long. I am confused and disorganized because of the suddenness of the situation, and I am not sure what I should do now.

    Category 5 was the smallest; however, PPCs had difficulty communicating with HCPs:

    Is it okay to tell a doctor working very hard to treat me to stop the medication or to be reluctant to do so, such as asking him to reduce the dosage?

    Percentage of PVPs in each category based on the number of respondents by medical professions

    Table 3 shows the number and percentage of PVPs in each category, according to the number of respondents in each medical profession. Physicians had remarkably high percentages of ‘treatment’ in category 1 and two topics in category 2 compared with other HCPs—still, they had low PVPs about ‘care for treatment side effect or complication’ in category 1 and three topics in category 3, and no PVPs related to ‘second opinion’ in category 1, ‘anxiety, depression, or confusing’ in category 4 and ‘communication with HCPs’ in category 5.

    View this table:
    Table 3

    Number and percentage of patients’ and their families’ views and preferences categories and topics by medical profession

    Nurses had a slightly higher percentage of PVPs related to ‘characteristics of pancreatic cancer’ in category 2. None of the PVPs related to ‘second opinion’ in category 1 and ‘communication with HCPs’ in category 5 were similar to those of physicians. Additionally, two topics in category 3 and category 4 were also similar to those of physicians.

    Pharmacists had a higher percentage of PVPs related to ‘care for treatment side-effect or complication’ in category 1 compared with other medical professions and a higher rate of ‘treatment’ in category 1. Unlike physicians and nurses, they had a lower percentage of PVPs related to ‘characteristics of pancreatic cancer’ in category 2. However, similar to physicians and nurses, they had a lower rate of PVPs related to ‘second opinion’ in category 1 and category 3.

    Characteristically, cancer counsellors had considerable numbers of PVPs on all topics. PVPs more prevalent than in other HCPs were related to ‘second opinion’ in categories 1, 3 and 4. It was also the only profession with PVP categorised under ‘communication with HCPs’ in category 5. On the other hand, the percentage of PVP related to ‘characteristics of pancreatic cancer’ in category 2 was lower than those of physicians and nurses.

    Discussion

    From the number of PVPs in each topic, PPCs and their families mainly sought information about disease, treatment and care. The open-ended responses of PVPs classified ‘characteristics of the disease’ in category 2 revealed the urgent voices of PPCs, including queries about advanced cancer, remaining time and the rapid progression of the disease. PVPs classified as ‘Treatment and care’ in category 1 were related to exploring treatment options, including non-standard therapies like complementary medicine, which also indicate the difficult situation of PPCs and their families; that is, PPCs and their families may seek information about pancreatic cancer itself and express their questions to HCPs, including their feelings of doubt in the immediate postdiagnosis period20 when they cannot accept the reality. Simultaneously, they are aware of the situation and persist in seeking information regarding potential ways to save and cure. A previous study also pointed out that PPCs seek treatment in anticipation of recurrence and seek ways to survive even when death is in sight.10 With pancreatic cancer, the time between diagnosis and end of life is often particularly short; therefore, the ongoing search for information about available treatments itself may be support for PPCs and their families throughout the disease trajectory.

    The different professions accounted for differences in the proportion of the topics. ‘Treatment’ in category 1 was the principal topic for all HCPs and exceptionally high for physicians. It reflects the role of physicians in explaining treatment to patients and answering their questions. ‘Care for treatment side-effect or complication’ was the second largest topic for all respondents. However, the ratio was low for physicians but high for pharmacists, followed by nurses. In Japan, cancer care hospitals designated by the government are required to staff a dedicated pharmacist involved in drug therapy,13 and there is a system under which reimbursement can be calculated when a pharmacist provides explanations to patients about regimens and side effects.21 There are similar standards for nurses,13 21 who play an active role in administering cancer drugs to patients. PPCs often receive chemotherapy in hospitals,22 so they might have more opportunities to ask pharmacists and nurses about the side effects of treatment.

    Similarly, the percentage of the topic ‘characteristics of the disease’ in category 2 was highest among physicians, followed by nurses. It may indicate the physician’s role in noticing the cancer diagnosis and providing information on disease progression and prognosis. Patients expect nurses to explain what they may be hesitant to ask physicians and to act as a bridge between them and physicians,23 which may reflect why the percentage of nurses was second only to physicians. Differences in topic percentage among each HCP indicate that HCPs who are directly involved in treatment need to recognise at what stage of the diagnosis and treatment process each profession is often involved with the patient and what kind of support the patient needs from each profession. Furthermore, they play complementary roles and support the patient according to the stage of the disease process and the needs of PPCs.

    Conversely, cancer counsellors had the highest percentage of topics related to ‘the possibility of application for non-standard treatment’ and ‘second opinion’ in category 1. In Japan, physicians do not often advise patients to obtain a second opinion.24 Additionally, due to the patients’ misunderstanding of the purpose of a second opinion and concern about the impact on their relationship with the physicians,25 it appears that patients are currently unable to discuss these issues with physicians, nurses and pharmacists who are directly involved in their treatment. As an indication of this, ‘communication with HCPs’ in category 5 is more frequently discussed by specific professions, particularly among cancer counsellors. For patients and families, physicians, nurses and other HCPs are the most common and essential sources of information26; however, HCPs who directly give treatment and care for patients and families, like physicians, nurses and pharmacists, tend to focus on providing general information about the availability of treatment, such as the standard of care. Immediately after diagnosis, PPCs require information about the disease and ways to cope with emotional problems and social life.20 The topic of ‘communication with HCPs’ may suggest that PPCs expect to communicate with HCPs about their feelings and lives, adding to dealing with the disease and treatment.

    In Japan, most cancer counsellors belong to an independent section from those directly involved in the treatment, and they are required to maintain confidentiality regarding the consultation content.15 Given the above environment, the highest proportion of cancer counsellor responses may be related to non-standard treatments and seeking second opinions. Consulting with cancer counsellors is a valuable resource for patients to discuss aspects they may not feel comfortable discussing directly with HCPs directly involved in treatment. It allows them to communicate their feelings to HCPs with their consent, and to receive advice on how to communicate their feelings and wishes to HCPs.

    PVPs in categories 3 and 4 were also mainly received by cancer counsellors. PVPs in these categories show that patients and their families had to adjust to their work and prepare for end-of-life conflicts and complicated feelings as the disease gradually progressed. A previous study revealed that the quality of life (QOL) of PPCs, encompassing physical, psychological and social aspects, is inferior to that of other cancer types. Moreover, caregivers’ QOL may also be adversely affected.27 Another study identified a lack of supportive care in PPCs.28 Patients and their families facing diminishing physical strength or facing incurable conditions often need information about home care to support them emotionally and help them prepare, especially at the end of life. In Japan, cancer counsellors play a crucial role in delivering cancer-related information and counselling to patients and their families.13 They provide consultations on daily life challenges during the entire duration of the disease, even after the treatment period.14 This underscores the vital role of cancer counsellors in providing information about home care and the social security system while supporting the feelings of patients and families throughout the disease trajectory.

    HCPs involved in treating pancreatic cancer must be aware that the PVPs of patients and their families may sometimes not be fully known, particularly in challenging conditions, such as when patients experience little benefit from treatment and have a severe prognosis. PPCs and their families may choose different professionals for consultation depending on their concerns. In other words, if PPCs and their families cannot ask a physician, pharmacist, nurse or other professional directly involved in their care about when to stop treatment and how to spend their end of life, they may ask a cancer counsellor who belongs to an independent section of HCPs directly involved in treatment.15 In cancer care, HCPs need to be mindful of this and encourage patients to seek essential support from independent HCPs who do not provide direct treatment or care, such as cancer counsellors. HCPs should also understand the role of each professional and collaborate with other professionals as appropriate to provide a holistic and supportive environment for PPCs.

    This study has three limitations. First, because HCPs collected PVPs, it did not reflect the direct words of patients and their families. However, because HCPs who regularly deal with patients collect PVPs, it is believed that the content of questions can be captured to some extent. Second, those genuinely in need may be unable to talk to HCPs and there may be other latent needs. Using the results of this study as a clue when interacting with PPCs and their families, we may be able to recognise potential needs by trying to understand their situation even if they do not complain. Third, the background of the PVPs, including the patient’s medical condition and treatment, the patient–family relationship and the situation in which the PVP was received, needed to be clarified. Thus, the relationship between the PVPs and these factors could not be clarified. However, the total number of pancreatic cancer-related PVPs collected during the 2-month survey was approximately 900, and the content of these PVPs varied widely. We believe that we can collect a wide range of information and support the needs of PPCs and their families in different stages and treatment situations. Collecting PVPs from HCPs also allows for more questions to be answered more quickly than collecting them directly from PPCs and their families. It will provide a stepping stone for identifying trends in information and care needs.

    In conclusion, PPCs seek comprehensive information on treatment, how to live their daily life after diagnosis and treatment, and how to spend their final days. In the context of the Japanese cancer care and treatment system, although different professionals provide different kinds of support to PPCs and their families, cancer counsellors who are not directly involved in treatment play an important role in providing holistic support to them. HCPs involved in pancreatic cancer care are expected to recognise that PPCs and their families have various information and support needs, that must be shared across professions, and that support systems leveraging each other’s expertise must be built to provide support in response to the PVPs by creating an environment that encourages consultations with each other as appropriate. It could lead to realising the diversity of patients’ thoughts, creating an environment where PPCs and their families can identify and discuss their needs and requirements.

    Ethics statements

    Patient consent for publication

    Acknowledgments

    The authors thank the HCPs who participated in this study.

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    Footnotes

    • Contributors TT, YT and CY designed and implemented the study and collected data. FH and YS conducted the analysis. FH wrote the first draft of the manuscript, and all authors read and approved the final manuscript. TT is responsible for the overall content as guarantor.

    • Funding This study was funded by the Health and Labor Sciences Research Grant awarded to Tomoko Takayama toward 'establishing a sustainable system of cancer information and support center system for the future (H29-Cancer Control-005),' 'establishing the quality of cancer counseling and building a sustainable system (R5-Cancer Control- 23EA2401),' and to Fumihiko Wakao toward 'establishing a system for prompt and timely provision of evidence-based cancer information to the public (R2-Cancer Control-20EA1008)'.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; internally peer reviewed.