Supportive Care Needs and Related Interventions in Patients with Pancreatic Cancer and Their Informal Caregivers: A Scoping Review

Abstract

Purpose

This scoping review aims to provide a comprehensive literature review regarding supportive care needs and related interventions for patients with pancreatic cancer and/or their informal caregivers.

Methods

Following the Joanna Briggs Institute Manual for Evidence Synthesis, we conducted this review. In January 2025, we searched five English databases using the keywords “pancreatic cancer,” “patients/caregivers,” “supportive care,” and “needs.” We summarized the data employing the Supportive Care Framework.

Results

Of the 4752 references identified, 43 articles were included in the review. Among the 33 descriptive studies, informational needs emerged as the most frequently reported supportive care need, identified in studies involving both patients and informal caregivers (n = 6), patients only (n = 13), and informal caregivers only (n = 5). These were followed by emotional needs (n = 4) for both patients and informal caregivers, physical needs (n = 8) for patients only, and emotional (n = 4) and practical needs (n = 4) for informal caregivers only. Psycho-educational interventions were the most frequently reported approach for addressing the needs of both patients and informal caregivers, while pain/symptom management interventions were the most frequently used to support patients alone. Four studies demonstrated statistically significant improvements in outcomes for intervention groups compared to control groups.

Conclusion

Patients with pancreatic cancer and their informal caregivers experienced a spectrum of supportive care needs, particularly informational needs. Intervention strategies have been developed to address their supportive care needs, but only a few studies demonstrated statistically significant improvements in outcomes. These findings advance our understanding of the supportive care needs and related interventions for patients with pancreatic cancer and/or their informal caregivers, providing a foundation for future research and targeted interventions to better address these needs.

Supplementary Information

The online version contains supplementary material available at 10.1007/s12029-025-01218-8.

Introduction

Pancreatic cancer (PC) remains one of the most lethal cancers and ranks seventh among cancer-related deaths worldwide. Developed countries have a higher burden than developing countries [1]. In 2019, there were 530,297 new cases worldwide compared to 197,348 in 1990, a 168.7% increase [2]. Rates are four to five times higher in countries with a higher Human Development Index (HDI) versus lower HDI countries, with the highest incidence rates in Europe, Northern America, and Australia/New Zealand [3]. Due to its poor prognosis, pancreatic cancer accounts for almost as many deaths as cases [3]. In 2019, there were 531,107 new deaths globally, a 168.2% increase from 198,051 in 1990 [2]. Although the treatment of pancreatic cancer has improved, the overall 5-year survival rate remains just above 10% [4, 5]. A recent study reported a 2-year survival rate of 32.1%, providing a better foundation for improving the quality of life for pancreatic cancer survivors [6].

Pancreatic cancer often involves complex treatments with significant morbidity, placing a substantial burden on both patients and their informal caregivers. The diagnosis is frequently overwhelming, as the disease progresses rapidly, leaving little time for adjustment [4, 5]. As an aggressive illness, pancreatic cancer profoundly impacts a patient’s physical and emotional well-being [7]. Symptoms often emerge in advanced stages, complicating treatment efforts. Common challenges include severe pain, digestive issues, emotional distress, and debilitating treatment side effects [8]. Informal caregivers, such as family members and close friends, play a critical role in supporting patients. However, caregiving comes with considerable challenges, including emotional strain, physical exhaustion, financial hardship, social isolation, and the stress of medical decision-making [9, 10]. Ultimately, pancreatic cancer significantly affects both patients and informal caregivers, underscoring the need for robust support systems and resources. Therefore, it is essential to better understand the supportive care needs of both patients and informal caregivers to enhance treatment tolerance, compliance, and overall quality of life.

Patients with pancreatic cancer and their informal caregivers typically have supportive care needs. In a cross-sectional questionnaire survey conducted in the UK, 49% (108/221) of patients reported one or more moderate or high unmet supportive care needs, particularly prominent in the advanced stage group [6]. The psychological and physical/daily living domains had the most pressing supportive care needs, including uncertainty about the future, fears of cancer progression, and diminished daily functioning [6]. In a qualitative descriptive study, ten informal caregivers identified critical needs in supporting patients with pancreatic cancer, including psychological support (e.g., coping with impending death and loss of life), managing symptoms and side effects (e.g., pain, anorexia, weakness), daily activities (e.g., inability to work, reducing housework), and participation in decision-making [11]. Informal caregivers also needed psychological support, assistance in care activities, financial support, and improved patient communication [11]. Furthermore, a mixed-methods study involving 117 pancreatic cancer patients and informal members in the USA emphasized the crucial role of providing tailored information to meet patient/informal caregiver needs during initial diagnosis [12].

Many interventions proposed addressing the diverse supportive care needs of patients with pancreatic cancer and their informal caregivers, particularly those with advanced disease. Maltoni et al. conducted a study comparing systematic early palliative care with on-demand early palliative care in 207 outpatients with inoperable pancreatic cancer; they found that patients in the systematic early palliative care group had significantly better mean scores on the Hepatobiliary Cancer Subscale and Trial Outcome Index at 3 months compared to those in the on-demand group [13]. Tseng et al. developed the Shared Decision-Making with Oncologists and Palliative care specialists (SOP) model, based on the traditional three-talk model of shared decision-making (SDM) and the Seek participation, Help comparison, Assess values, Reach decision, Evaluate decision (SHARE) model. After implementing this model in 137 advanced pancreatic cancer patients, they noted a significant increase in patients’ willingness to receive palliative care, from 50 to 78.69% [14]. Schenker et al. evaluated early specialty physician-led palliative care for 30 advanced pancreatic cancer patients and 30 caregivers; they revealed challenges such as inconvenience, long travel times, spending too much time at the cancer center, and no perceived palliative care needs [15]. Physicians recommended integrating palliative care services within oncology clinics, tailoring services to meet patient needs, and enhancing face-to-face communication between oncologists and palliative care specialists [15].

Several published reviews have explored the supportive care needs and experiences of patients with pancreatic cancer or their informal caregivers. Scott et al. conducted a literature review highlighting the significant levels of supportive care needs among these patients. They emphasized the evolving physical and psychological needs and evaluated interventions such as integrating palliative care within oncology settings, holistic needs assessments, survivorship care plans, and educational sessions to address informational and supportive care needs [16]. However, this was not a systematic review and was over 5 years old. Chong et al. identified unmet informal caregiver needs, including better clinical communication, caregiver support, and assistance in navigating the healthcare system [9]. However, this systematic review primarily focused on unmet needs rather than comprehensive supportive care needs. Kim et al. summarized the physical, emotional, spiritual, and informational unmet needs among informal caregivers of patients with pancreatic cancer [17]. Like Scott et al., this review was not a systematic review and focused on caring experiences rather than a comprehensive assessment of supportive care needs. In addition, these three reviews did not employ a framework to support the rationale for supportive care in patients with cancer. Collectively, these reviews underscore the gaps in understanding and addressing the supportive care needs of pancreatic cancer patients and their informal caregivers. We conducted a scoping review using the Supportive Care Framework for Cancer Care to provide a comprehensive view of the landscape of supportive care needs and related interventions [18].

Review Questions

1. What are the supportive care needs of patients with pancreatic cancer and/or their informal caregivers?

2. What are the related interventions to meet these supportive care needs?

Methods

We developed this scoping review following the methodology of the Joanna Briggs Institute Manual for Evidence Synthesis [19]. We reported it according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist (PRISMA-ScR) [20]. We registered the review protocol on the Open Science Framework (OFS) (10.17605/OSF.IO/TK9X6).

Inclusion and Exclusion Criteria for Studies

The participants of the included studies (1) were humans, (2) were aged 18 or older, and (3) had a confirmed diagnosis of pancreatic cancer or were informal caregivers of patients with pancreatic cancer.

The term “supportive care” refers to providing the necessary services for those living with or affected by cancer [18, 21]. These services aim to meet their informational, emotional, spiritual, social, or physical needs during the diagnosis, treatment, or follow-up phases. This encompasses health promotion and prevention, survivorship, palliation, and bereavement issues. “Needs” refers to the health services required by patients and informal caregivers and the health services that patients and informal caregivers can and will retain.

We had no restrictions on the studies’ context, including geographic location and/or specific social, cultural, or gender-based interests.

We included quantitative, qualitative, and mixed-methods studies. We excluded reviews, editorials, opinion articles, guidelines, protocols, case studies, and conference abstracts.

Search Strategy

A health-sciences librarian searched for related reviews across Prospero, TRIP Database, PubMed, and OSF Registries. In January 2025, we searched five bibliographic databases: PubMed, CINAHL, Scopus, Cochrane Library, and PsycINFO. The search algorithm, developed in coordination with a health-sciences librarian, is detailed in supplementary information File 1. The search string combined keywords and subject headings related to supportive care needs among pancreatic cancer patients and their informal caregivers. We did not restrict publication dates but limited the results to English-language publications. We did not conduct a gray literature search. We subjected the search to PRESS peer review using a modified version of the PRESS document [22] and then translated it into all included databases.

Study Selection

A health-sciences librarian exported the references from each database and imported them into Covidence. Afterward, we identified and removed duplicate records. Firstly, two reviewers independently reviewed the titles and abstracts of all references with the priori inclusion and exclusion criteria. Then, the two reviewers independently reviewed the full texts of the remaining references according to the same criteria. A third reviewer resolved any disagreements.

Data Extraction and Management

Two reviewers independently extracted data from the included studies into a structured data recording form. A third reviewer resolved any disagreements when the two reviewers could not resolve the disagreements by consensus. The extracted data included first author, year of publication, country of research, study design, study setting, patient sample size, cancer stage, informal caregiver sample size, measure, intervention details (theoretical basis, components, mode, format, duration, dosage, interventionist), control group, and results.

Data Synthesis and Presentation

We synthesized the data using Fitch’s Supportive Care Framework for Cancer Care [18]. The supportive care needs identified in each study were classified as physical, emotional, practical, informational, spiritual, social, psychological, and other domains. Then, we counted these supportive care needs based on their frequency of identification. We summarized the intervention strategies according to the services or activities provided. We presented the results using descriptive summaries and tables.

Results

Search Results

Using our search strategy, we identified 4744 references from the Cochrane Library (n = 265), PubMed (n = 2962), CINAHL (n = 493), Scopus (n = 965), and PsycINFO (n = 59). We removed duplicates automatically (n = 898) and manually (n = 15). Out of the 3831 references initially considered, we deemed 3633 references irrelevant after screening their titles and abstracts. Following full-text screening, we excluded 155 references that did not meet the inclusion criteria. Ultimately, we included 43 studies. Figure 1 shows the PRISMA flow diagram depicting the reference screening and selection processes.

Fig. 1.

PRISMA flow diagram of the reference screening and selection processes

Overview of the Included Studies

The 43 included studies spanned publication years from 2006 to 2024, with 13 conducted in the USA. Of these, 33 were descriptive studies, including qualitative (n = 19), mixed methods (n = 9), and quantitative (n = 8) designs; ten were experimental. Ten studies occurred in cancer centers or hospitals. Additionally, 20 studies included both patients with pancreatic cancer and their informal caregivers. Eleven studies had a sample size exceeding 100 patients and/or their informal caregivers. These included studies covered all cancer stages. Table 1 contains details of the included studies.

Table 1.

The study characteristics (N = 43)

Author, year, and country	Study design	Setting	Sample size of patient	Cancer stage	Sample Size of informal caregiver
Descriptive studies (N = 33)
Needs of both patients and informal caregivers
Zhang et al. [23], China	Qualitative	Tertiary hospital	N = 10	Mixed	N = 10 spouses
Ploukou et al. [11], Greece	Qualitative	Cancer hospital	-	Unclear	N = 10 informal caregivers
Khan et al. [24], Australia	Qualitative	Public and private hospitals	N = 11	Unclear	N = 7 informal caregivers
Griffioen et al. [25], Netherlands	Auto-ethnography and qualitative interviews	Erasmus Medical Center Rotterdam	N = 13	Locally advanced	N = 13 significant others
Okuhara et al. [26], Japan	Quantitative content analysis	“Ganjoho service” website of the National Cancer Center Japan	N = 126	Unclear	N = 159 family members
Hagensen et al. [12], America	Observations, interviews, questionnaires, and focus groups	Large referral center for pancreatic cancer care	N = 117 (sample sizes were not separately reported for patients and informal caregivers)	Unclear	N = 117 (sample sizes were not separately reported for patients and informal caregivers)
Grant et al. [27], America	Mixed-methods descriptive	The Johns Hopkins Kimmel Cancer Center (JHKCC) website	N = 9	Unclear	N = 58 relatives
Gooden et al. [28], Australia	Qualitative inquiry	Cancer Council Helpline	N = 12	Stage III or IV and stage II to III	N = 23 carers/family members
Grant et al. [29], America	Qualitative descriptive	Palliative care nurse practitioner webpage of The Johns Hopkins Kimmel Cancer Center (JHKCC)	N = 3	Unclear	N = 53
Chapple et al. [30], England	Qualitative	Teaching hospitals, general clinics	N = 32	Unclear	N = 8 relatives/carers of deceased pancreatic cancer patients
Saunders et al. [31], Australia	Qualitative	Cancer Council NSW	N = 6	Unclear	N = 5 carers
Coleman et al. [32], America	Descriptive-comparative mixed methods	Johns Hopkins Pancreatic Cancer Web site Patient/Family Chat Room	N = 597 (sample sizes were not separately reported for patients and informal caregivers)	Unclear	N = 597 (sample sizes were not separately reported for patients and informal caregivers)
Nolan et al. [33], America	Qualitative description	Johns Hopkins Pancreatic Cancer Web site Patient/Family Chat Room	N = 600 (sample sizes were not separately reported for patients and informal caregivers)	Unclear	N = 600 (sample sizes were not separately reported for patients and informal caregivers)
Patients’ needs only
Nguyen et al. [34], Australia	Qualitative	Tertiary hospital	N = 10	Resectable (N = 2), borderline resectable (N = 3), locally advanced (N = 3), metastatic (N = 2)	-
Gerhardt et al. [35], Denmark	Qualitative exploratory	Outpatient clinic at the digestive disease center	N = 4	Incurable cancers	-
Marinelli et al. [36], Italy	Observational	Inpatient clinic of the Pancreas Institute of the University Hospital	N = 104	Unclear	-
Ristau et al. [37], Germany	Grounded theory study	Nationwide self-help group	N = 26	Mixed	-
Carruba et al. [38], Italy	Quantitative	Clinical Oncology Unit at the ARNAS-Civico healthcare center	N = 11	Unclear	-
Lee et al. [39], America	Mixed-methods	Massachusetts General Hospital	N = 38	Unclear	N = 14 caregivers
Stevens et al. [40], America	Qualitative	Pancreatic cancer specialty specific multidisciplinary clinic	N = 12	Potentially resectable, borderline resectable, locally advanced	-
Mikkelsen et al. [41], Denmark	Qualitative	Outpatient clinic at the Department of Oncology	N = 7	Advanced	-
Watson et al. [6], England	Cross-sectional survey	National Health Service centers	N = 274	Any stage	-
Almont et al. [42], France	Cross-sectional	Regional university hospital	N = 23	Unclear	-
Dunleavy et al. [43], England	Qualitative	Outpatient clinics at two hospital sites within one National Health Service trust	N = 9	Unclear	-
Sandgren et al. [44], Sweden	Cross-sectional design	Departments of Oncology, Surgery, and Internal medicine in two acute care hospitals	N = 47	Palliative stage	-
Beesley et al. [45], Australia	Longitudinal	State-wide network of clinicians in hospitals and private practices	N = 116	Mixed	-
Cooper et al. [46], England	Phenomenological	National Health Service (NHS) Trust	N = 13	Stage III or IV	-
Schildmann et al. [47], Germany	Qualitative	University Hospital	N = 12	Stage IB (N = 3), stage IIA (N = 1), stage IIB (N = 3), stage III (N = 2), stage IV (N = 3)	-
Informal caregivers’ needs only
Huynh et al. [48], Australia	Cross-sectional	Hospitals and private practices	N = 84	Mixed	N = 84 carers
Ruff et al. [49], America	Cross-sectional mixed-methods analysis	The Ohio State University Wexner Medical Center	N = 28	Unclear	N = 28 caregivers
Ibrahim et al. [50], Sweden	Qualitative	Specialist surgical clinic in a university hospital	-	-	N = 6 next of kin to patients
Sherman et al. [51], America	Mixed methods	Oncology practices at a northeastern US university-affiliated medical center and National Cancer Institute-designated cancer center	-	Advanced	N = 8 family caregivers
Petrin et al. [52], America	Qualitative	Four population-based centers and four clinic-based centers	-	Unclear	N = 22 first-degree relatives
Experimental studies (N = 10)
Meeting needs of both patients and informal caregivers
Beesley et al. [53], Australia	Single-arm feasibility	Tertiary cancer center	N = 5	Mixed	N = 7 carers
Tong et al. [54], Canada	Mixed method	The Wallace McCain Centre for Pancreatic Cancer	-	-	-
Meeting patients’ needs only
Kim et al. [55], Canada	Prospective case-crossover	CancerCare Manitoba	N = 40	Locally advanced (N = 12), metastatic (N = 28)	-
Chung et al. [56], America	Unblinded randomized trial	City of Hope and Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins hospital	N = 42 (intervention arm: N = 26, control arm: N = 16)	Unclear	-
Tseng et al. [14], China	Prospective cohort	National cancer treatment medical center oncology outpatient clinic	N = 137 (SOP model used: N = 61, SOP model not used: N = 76)	Stage III or IV	-
Marinelli et al. [57], Italy	Two-arm parallel randomized feasibility	Pancreas Institute of the University Hospital of Verona	N = 114 (intervention arm: N = 65, control arm: N = 49)	Unclear	-
Schenker et al. [15], America	Mixed-methods pilot randomized controlled trial	National Cancer Institute-designated comprehensive cancer center	N = 30 (intervention arm: N = 20, usual care: N = 10)	Advanced	N = 30 caregivers (intervention arm: N = 20, usual care: N = 10)
Maltoni et al. [13], Italy (a)	Multicenter, randomized	21 centers	N = 186 (interventional arm: N = 97, standard arm: N = 89)	Advanced and/or metastatic	-
Maltoni et al. [58], Italy (b)	Multicenter, randomized	21 centers	N = 186 (interventional arm: N = 97, standard arm: N = 89)	Advanced and/or metastatic	-
Sun et al. [59], America	Prospective, pre- and postintervention pilot study	Oncology ambulatory clinics of comprehensive cancer center	N = 10	Stage III or IV	-

The Supportive Care Needs

We categorized the supportive care needs of pancreatic cancer patients and/or their informal caregivers based on the Fitch’s Supportive Care Framework for Cancer Care (Table 2) [18]. The descriptive studies examined the needs of both patients and informal caregivers (n = 11), patients only (n = 18), and informal caregivers only (n = 9). Only one descriptive study used a theoretical framework, the Stress Process Model, to guide the selection of study variables and instruments [51].

Table 2.

Supportive care needs of pancreatic cancer patients and their family caregivers (descriptive studies, N = 33)

Author	Participant		Supportive care need
	Patient	Informal caregiver	Physical	Informational	Emotional	Psychological	Social	Spiritual	Practical
Needs of both patients and informal caregivers
Zhang et al. [23]	√	√					√ Connections
Ploukou et al. [11]		√	√ Nutrition, pain, and fatigue
Griffioen et al. [25]	√	√		√ Disease, medication, nutrition, self-management, treatment, and delivery mode
Okuhara et al. [26]	√	√		√ Pain and diet, treatment
Hagensen et al. [12]	√	√		√ Delivery mode	√ Negative emotion
Grant et al. [27]	√	√	√ GI symptoms pain, nutrition, and treatment complication		√ Anxiety and concern		√ General		√ Ethical and legal issue
Grant et al. [29]	√	√	√ Diet/nutrition, medication side effects, and pain		√ Concern		√ Family issue		√ Ethical and legal issue
Chapple et al. [30]	√	√		√ Delivery mode
Saunders et al. [31]	√	√		√ Treatment and delivery mode
Coleman et al. [32]	√	√		√ Treatment and symptoms	√ General			√ Prayer	√ Financial
Nolan et al. [33]	√	√						√ Prayer
Number of study (subtotal)	-	-	3	6	4	0	3	2	3
Patients’ needs only
Nguyen et al. [34]	√		√ Nutrition
Gerhardt et al. [35]	√			√ Decision-making
Marinelli et al. [36]	√			√ General
Ploukou et al. [11]		√		√ Decision-making		√ Anxiety
Ristau et al. [37]	√			√ Disease
Carruba et al. [38]	√		√ General			√ Anxiety, body image, and depressive state
Khan et al. [24]	√	√	√ Pain and fatigue	√ Diet and delivery mode	√ Fear, shock, sadness, and being overwhelmed
Lee et al. [39]	√	√		√ Decision-making
Stevens et al. [40]	√			√ Treatment and delivery mode					√ Help with activities of daily living
Mikkelsen et al. [41]	√								√ Exercise
Watson et al. [6]	√		√ Lack of energy/tiredness and digestion problem	√ General	√ Anxiety, depressive state, fear, uncertainty, and worry
Almont et al. [42]	√					√ Sexual
Dunleay et al. [43]	√			√ Symptom management and delivery mode
Sandgren et al. [44]	√		√ Pain and deterioration
Beesley et al. [45]	√		√ General	√ General		√ General
Cooper et al. [46]	√		√ Nutrition	√ Delivery mode
Gooden et al. [28]	√	√	√ Diet and gastrointestinal symptoms	√ Treatment
Schildmann et al. [47]	√			√ Treatment
Number of study (subtotal)	-	-	8	13	2	4	0	0	2
Informal caregivers’ needs only
Zhang et al. [23]	√	√	√ Physical		√ Emotional
Huynh et al. [48]	√	√		√ Physical needs and treatments	√ Fear			√ Finding meaning	√ Caregiving
Ploukou et al. [11]		√				√ Caregiving stress			√ Caregiving training
Ruff et al. [49]	√	√		√ Symptom management and treatment
Khan et al. [24]	√	√							√ Caregiving, financial, and health services
Ibrahim et al. [50]		√		√ Caregiving and decision-making
Sherman et al. [51]		√		√ Treatment	√ Service for emotion
Gooden et al. [28]	√	√			√ Concern
Petrin et al. [52]		√		√ Disease					√ Family members’ own life
Number of study (subtotal)	-	-	1	5	4	1	0	1	4
Number of study (total)	-	-	12	24	10	5	3	3	9

Supportive Care Needs of Both Patients and Their Informal Caregivers

Among the studies reviewed, 11 identified supportive care needs shared by both pancreatic cancer patients and their informal caregivers. Ten of these studies included both patients and informal caregivers as participants, while one study focused solely on informal caregivers to explore the supportive care needs of both patients and informal caregivers. The most frequently reported need was informational support (n = 6), encompassing concerns related to disease, medication, nutrition, self-management, symptoms, treatment options, and delivery modes. Emotional needs (n = 4) were characterized by negative emotions, such as anxiety. Physical needs (n = 3) centered on issues like nutrition, pain, fatigue, gastrointestinal symptoms, and treatment complications. Practical needs (n = 3) included financial concerns and ethical/legal issues. Social needs (n = 2) included connections, family-related issues, and other general concerns, while spiritual needs (n = 2) focused on prayer. In contrast, psychological needs were not commonly reported in either group.

Patients’ Supportive Care Needs

Eighteen studies identified the unique supportive care needs of patients with pancreatic cancer. Of these, 14 focused exclusively on patients, three examined both patients and informal caregivers, and one explored supportive care needs solely from the perspective of informal caregivers. Informational needs were the most frequently reported (n = 13), encompassing areas such as decision-making, disease management, diet, symptom management, treatment-related issues, and delivery methods. Physical needs (n = 8) primarily involved pain, fatigue, nutrition, digestive problems, and other general health concerns. Psychological needs (n = 4) included anxiety, body image, depressive states, and sexual concerns. Emotional needs, though less frequently documented (n = 2), involved feelings of fear, shock, sadness, being overwhelmed, uncertainty, and worry. Practical needs (n = 2) centered on daily living assistance and exercise. Notably, social and spiritual needs were not identified in the reviewed studies.

Informal Caregivers’ Supportive Care Needs

Night studies examined informal caregivers’ supportive care needs, with the majority identifying informational needs (n = 5), such as caregiving and decision-making, disease management, treatment, and symptom management. Practical concerns (n = 4) were also frequently reported, including challenges related to daily life, caregiving responsibilities, training, and financial issues. Emotional needs (n = 4) encompassed fear and the need for emotional support. Physical (n = 1) and psychological needs (n = 1) focused on the physical issues and stress associated with caregiving, respectively, while spiritual needs (n = 1) highlighted informal caregivers’ search for meaning. Notably, social needs were not reported in these studies.

Interventions to Meet the Supportive Care Needs

Ten experimental studies examined the effectiveness of various interventions on the supportive care needs of patients with pancreatic cancer and/or their informal caregivers. These interventions were categorized based on the services or activities following the Supportive Care Framework for Cancer Care by Fitch [18]. Among the ten experimental studies, two implemented interventions that simultaneously addressed the needs of both pancreatic cancer patients and their informal caregivers.

Interventions Targeting Both Patients and Informal Caregivers

As presented in Table 3, the most targeted areas were psycho-educational support (n = 2), orientation/ongoing patient and family education (n = 1), adjustment/supportive counseling (n = 1), nutritional intervention (n = 1), and pain/symptom management (n = 1). One of the two studies developed interventions based on a theoretical framework and involved at least two types of professionals, such as nurses, social workers, oncologists, and dieticians (Table S2). Standard measures assessed included feasibility, distress levels (using a distress thermometer), components of intervention sessions delivered, care plans and referrals, and interviews. Interventions were delivered either in-person (n = 1) or via phone/video (n = 1), and were administered individually, to couples, or in group settings. The duration of the interventions varied, ranging from a single session to nine sessions. One study reported dosages of once per week or fortnightly, with sessions lasting between 20 and 99 min.

Table 3.

Intervention strategies to meet supportive care needs of pancreatic cancer patients and their family caregivers (Experimental studies, N = 10)

Author	Intervention recipient		Intervention component
	Patient	Informal caregiver	Orientation/Ongoing patient and family education	Psycho-Educational	Adjustment/Supportive counselling	Nutritional intervention	Pain/Symptom management	Practical and functional assistance
Meeting needs of both patients and informal caregivers
Beesley et al. [53]	√	√		√ Promote self-efficacy
Tong et al. [54]	√	√	√ Information about palliative care and advance care planning	√ Psychoeducational intervention	√ Impact of cancer on patients and their families, and available supportive-care services	√ Nutrition	√ Self-management of symptoms
Number of Study (Subtotal)	-	-	1	2	1	1	1	0
Meeting patients’ needs only
Kim et al. [55]	√		√ 1. Patient and family/caregiver understanding of diagnosis and prognosis 2. Patient and family/caregiver education	√ Patient and family/caregiver coping	√ 1. Emotional wellbeing 2. Goals of care discussion 3. Advance care planning 4. Referrals 5. Follow up assessments 6. Patient guided ongoing assessments		√ 1. Pain and symptom management 2. Medication review
Chung et al. [56]	√						√ Management of symptoms
Tseng et al. [14]	√		√ Demonstrate all the possibilities regarding treatment and care		√ 1. Guides communication among patients, families, and healthcare providers, enabling them to make informed decisions about treatment and care 2. Build rapport between patients and physicians 3. Explore patients’ EOL care preferences		√ Address symptoms, and adverse effects
Marinelli et al. [57]	√			√ Reduce anxiety and foster patients’ abilities to cope with stress
Schenker et al. [15]	√		√ Illness understanding, preferences, and concerns		√ Relationships and rapport building; resources, review, and next steps		√ Physical symptoms, psychological/emotional distress	√ Social/financial/caregiver burden
Maltoni et al. [13] (a)	√				√ 1. Psychosocial and spiritual support 2. Assistance with treatment choices 3. Help in planning for care in the community 4. Bereavement support and referral		√ Pain and symptom management
Maltoni et al. [58] (b)	√				√ 1. Psychosocial and spiritual support 2. Assistance with treatment choices 3. Help in planning for care in the community 4. Bereavement support and referral		√ Pain and symptom management
Sun et al. [59]	√						√ Physical and emotional well-being	√ Social and spiritual well-being
Number of study (Subtotal)	-	-	3	2	5	0	7	2
Number of study (Total)	-	-	4	4	6	1	8	2

No study reported on emotional and peer support, crisis intervention, or psychotherapy.

Interventions Targeting Patients Only

Most interventions targeting patients have focused on pain/symptom management (n = 7), followed by adjustment/supportive counseling (n = 5), orientation/ongoing patient and family education (n = 3), psycho-educational services or activities (n = 2), and practical and functional assistance (n = 2) (see Table 3). One of the eight studies developed interventions using a theoretical basis. Four studies included interventions implemented by at least two types of professionals, such as physicians, nurses, chaplains, social workers, and oncologists. Eight studies had control groups. Standard measures assessed included quality of life, symptoms, and feasibility. Notably, four of the eight studies demonstrated statistically significant improvements in outcomes in intervention groups compared to control groups, as outlined in Table S2. The studies delivered the interventions in-person (n = 6) or through a hybrid approach combining in-person and phone/video methods (n = 2). Almost all interventions were delivered individually. The duration of the interventions ranged from a single session to an unlimited number of sessions until death. Most studies did not report the dosages of the interventions.

Discussion

This scoping review highlights the experiences of patients and their informal caregivers throughout pancreatic cancer care, emphasizing the range of informational, emotional, physical, practical, psychological, social, and spiritual challenges [18]. The supportive care needs identified in this review align with those found in previous reviews on overall types of cancer [60, 61], suggesting that the basic standards for cancer supportive care apply to pancreatic cancer patients and their informal caregivers [18]. Additionally, we identified a growing number of targeted interventions aimed at addressing these supportive care needs. Ongoing systematic assessment of supportive care needs and the implementation of tailored interventions remain essential to improving outcomes for both patients and their informal caregivers [18, 62].

Information is the highest reported supportive care need for pancreatic cancer patients and/or their informal caregivers. The diagnosis of pancreatic cancer is often overwhelming, and the treatment is complex and intense. Therefore, information regarding the treatment plan, related side effects, and symptom management can help patients and informal caregivers regain focus and control, allowing them to better cope with and process the life-threatening diagnosis [18, 52]. Moreover, information about treatment complications, alternatives, logistics, and potential outcomes is crucial for informed decision-making [39]. This information should be provided in understandable formats, using basic language, and delivered in a timely manner [25, 31, 40].

Emotional needs are also a significant concern for both pancreatic cancer patients and their informal caregivers [6, 12, 24, 28, 32, 51]. Among the questions posted on a pancreatic cancer website, the second most common category involved concerns about the illness and emotional issues related to pancreatic cancer [29]. Informal caregivers reported feelings of confusion, anger, sadness, and hopelessness following a loved one’s diagnosis of terminal cancer and sought guidance on coping strategies [32]. These findings highlight the need for supportive care services that address both the emotional challenges of a cancer diagnosis and the complexities of the caregiving role [12].

This review also underscores the persistence of inadequate physical symptom management throughout the cancer journey, highlighting supportive care needs for nutrition, gastrointestinal symptoms, and pain [27–29, 46]. The higher needs for symptom management align with the traditional approach to supportive care, emphasizing the importance of managing cancer and treatment-related symptoms [62]. Eating distress and poor food intake lead to associated weight loss, a significant prognostic indicator of survival and response to treatment [18]. Therefore, patients should consider specialized cancer treatment support services for diet and nutrition [38, 62].

Patients and informal caregivers identified practical needs, such as assistance with daily activities, financial support, and help with caregiving. This aligns with previous studies that highlighted financial needs as the most prevalent for people with advanced cancer and their informal caregivers [60]. Thus, supportive care services should include assistance with daily activities, financial services, and guidance for appropriate patient care. Similarly, psychological needs, including the ability to cope with the illness experience and its consequences, were prevalent among patients and informal caregivers [11, 27]. This study identified anxiety and depressive state as the primary psychological issues [38], indicating areas where supportive care services should focus.

The literature highlights a growing number of targeted interventions aimed at addressing the supportive care needs of pancreatic cancer patients and their informal caregivers. Among interventions designed for both patients and caregivers, psycho-educational services or activities are the primary components. Beesley et al. emphasized the importance of enhancing self-efficacy for both groups [53], while Tong et al. developed a comprehensive psycho-educational intervention covering palliative care, advance care planning, the impact of cancer on patients and families, available supportive care services, nutrition, and symptom self-management [54]. However, no studies have exclusively focused on interventions tailored specifically for informal caregivers of pancreatic cancer patients, underscoring a significant gap and an opportunity for future research.

For interventions targeting patients’ needs only, the most common components focus on pain and symptom management [16]. Chung et al. explored the impact of palliative care interventions on physical and psychological symptoms, revealing a trend toward improvement in physical, social, emotional, and psychological distress and functional quality of life (QOL) subscales [56]. Other interventions involving pain/symptom management are offered alongside other services or activities, such as orientation/ongoing patient and family education [14, 15, 55], psycho-educational activities [55], adjustment/supportive counseling [13–15, 55, 58], and practical and functional assistance [15, 59]. The SOP model by Tseng et al. was the only pain/symptom management intervention based on theoretical frameworks, indicating a significant increase in patients’ willingness to receive palliative care from 50.00 to 78.69% after implementing the SOP model (p = 0.01) [14]. The literature review by Scott et al. also pointed out that palliation of pain and non-pain symptoms is crucial for supportive care in patients with pancreatic cancer, and early referral to palliative care and its integration within oncology may improve management [16].

This scoping review has several limitations. First, it includes only publications in English, potentially excluding relevant studies in other languages that could offer additional insights. Second, most of the included studies involved participants at various stages of cancer, making it challenging to isolate findings specific to each stage. Since supportive care needs and related interventions vary by cancer stage and treatment phase, future research should further explore these differences in pancreatic cancer patients and their informal caregivers.

In summary, patients with pancreatic cancer and/or their informal caregivers have diverse, supportive care needs, particularly regarding information. Various intervention strategies have been implemented to address these needs, but only a few showed statistically significant outcome improvements. These findings enhance our understanding of the supportive care needs of pancreatic cancer patients and their informal caregivers, providing a basis for future healthcare practice and research.

Supplementary Information

Below is the link to the electronic supplementary material.

Author Contributions

LF and LS performed the study’s conceptualization and methodology. LF, SHK, DDG, ML, LRR, and MH conducted data curation and software. LF and SHK performed the formal analysis and writing of the original draft. AP and LS provided project administration, resources, supervision, validation, and visualization. CV, AP, PY, and LS provided writing-review and editing. All authors reviewed and edited the final version of the manuscript.

Data Availability

All data generated or analyzed during this study is included in this published article (and its supplementary information files).

Code Availability

Not applicable.

Declarations

Ethics Approval

Not applicable.

Consent to Participate

Not applicable.

Competing Interests

The authors declare no competing interests.