Exploring supportive care needs and future research directions in pancreatic cancer: A focus group study with patients, caregivers and health care professionals.

The early integration of supportive care in oncology improves patient-centered outcomes. However, data are lacking regarding how to achieve this in resource-limited settings. We studied whether patient navigation increased access to multidisciplinary supportive care among Mexican patients with advanced cancer. This randomized controlled trial was conducted between August 2017 and April 2018 at a public hospital in Mexico City. Patients aged ≥18 years with metastatic tumors ≤6 weeks from diagnosis were randomized (1:1) to a patient navigation intervention or usual care. Patients randomized to patient navigation received personalized supportive care from a navigator and a multidisciplinary team. Patients randomized to usual care obtained supportive care referrals from treating oncologists. The primary outcome was the implementation of supportive care interventions at 12 weeks. Secondary outcomes included advance directive completion, supportive care needs, and quality of life. One hundred thirty-four patients were randomized: 67 to patient navigation and 67 to usual care. Supportive care interventions were provided to 74% of patients in the patient navigation arm versus 24% in usual care (difference 0.50, 95% confidence interval [CI] 0.34-0.62; p < .0001). In the patient navigation arm, 48% of eligible patients completed advance directives, compared with 0% in usual care (p < .0001). At 12 weeks, patients randomized to patient navigation had less moderate/severe pain (10% vs. 33%; difference 0.23, 95% CI 0.07-0.38; p = .006), without differences in quality of life between arms. Patient navigation improves access to early supportive care, advance care planning, and pain for patients with advanced cancer in resource-limited settings. The early implementation of supportive care in oncology is recommended by international guidelines, but this might be difficult to achieve in resource-limited settings. This randomized clinical trial including 134 Mexican patients with advanced cancer demonstrates that a multidisciplinary patient navigation intervention can improve the early access to supportive and palliative care interventions, increase advance care planning, and reduce symptoms compared with usual oncologist-guided care alone. These results demonstrate that patient navigation represents a potentially useful solution to achieve the adequate implementation of supportive and palliative care in resource-limited settings globally.

Pancreatic cancer remains one of the most lethal cancers and predominantly affects older adults. This scoping review aims to provide a comprehensive review of the literature regarding supportive care needs and corresponding interventions in patients with pancreatic cancer and their family caregivers. We conducted this scoping review following the Joanna Briggs Institute Manual for Evidence Synthesis. We searched five English databases using ‘pancreatic cancer,’ ‘patients/caregivers,’ ‘supportive care,’ and ‘needs’ in January 2024. We summarized the data employing the Supportive Care Framework. Of the 4,342 references identified, 41 were included. Among the 31 descriptive studies, the top four highest supportive care needs were informational (n = 24), physical (n = 10), emotional (n = 9), and practical needs (n = 8). In the 10 experimental studies, most of the interventions in involved pain/symptom management (n = 8), following by adjustment/supportive counselling (n = 6), psycho-educational service or activity (n = 4), and orientation/ongoing patient and family education (n = 4). Four studies demonstrated statistically significant improvements in outcomes for intervention groups compared to control groups. Patients with pancreatic cancer and their family caregivers experienced a spectrum of supportive care needs, particularly informational needs. Several intervention strategies were applied to address these supportive care needs, but only a few demonstrated statistically significant improvements in outcomes. These findings enhance our understanding of the supportive care needs and appropriate interventions for patients with pancreatic cancer and their family caregivers, providing a foundation for further research to address these needs through a health equity lens.

Locally Advanced Non-Metastatic Pancreatic Cancer — Can We Do More?

Early Supportive and Nutritional Care For Adults With Pancreatic Cancer: A Pilot Study.

Emotional support for patients is critical for achieving person-centered care. However, the literature evidences an ongoing challenge in embedding emotional support within current health services. This study aimed to investigate the strategies to embed emotional support from the perspectives of patients and clinicians. This is an exploratory qualitative study that collected data through focus group discussions (FGDs) and interviews from 11 patients, 2 carers, and 7 clinicians in the multi-disciplinary care teams in an outpatient complex and chronic care setting in New South Wales, Australia. The FGDs and interviews were recorded, transcribed, and thematically analyzed. Three main themes emerged from the experience of both the patients and clinicians: (1) warmth and kindness, (2) deep listening, and (3) social connection in the process of treatment. Clinicians’ and patients’ shared experience of these themes was key to embed emotional support in care. Practical strategies including promoting shared understanding of emotional support, enhancing provider's capability to deliver emotional support, and building patient's networking opportunities in treatment processes were discussed to facilitate emotional support in patient care and health services.

People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people's needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Queensland pancreatic or ampullary cancer patients (n = 136, 54% of those eligible) completed a survey, which assessed 34 needs across five domains (Supportive Care Needs Survey-Short Form) and use of health services. Differences by resection were compared with Chi-squared tests. Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs, whereas health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included 'not being able to do things they used to do' (41%), 'concerns about the worries of those close' (37%) and 'uncertainty about the future' (30%). Patients with non-resectable disease reported greater individual information needs, but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.

e24050 Background: Pancreatic cancer is an aggressive malignancy that disproportionately impacts older adults. Older adults with pancreatic cancer experience reduced quality of life and nutritional status compared with younger adults. Despite this, supportive care and nutrition programs for this population remain underdeveloped. This study aimed to assess the feasibility of an early supportive care and nutrition program for older adults with advanced pancreatic cancer initiating chemotherapy. Methods: Participants scheduled for pancreatic surgery and initiating neoadjuvant chemotherapy received supportive care and a dietitian referral prior to chemotherapy initiation, along with ongoing supportive care and dietitian visits for 12 weeks. Participants logged daily food intake via Fitbit and completed symptom assessments between visits. Results: The median age of participants was 71. The race/ethnicity distribution was 82.6% Non-Hispanic White, 8.7% Hispanic, 4.3% Non-Hispanic Black, and 4.3% Other. A priori benchmarks for recruitment (≥50% consent rate), retention (≥70%), intervention satisfaction (≥60%), and adherence to dietitian and supportive care visits (≥60%) were met. However, the benchmark for food logging (70% of study days) was not achieved (52% vs. 60%). Significant improvements were observed over 12 weeks in nutritional status, as measured by a reduced PG-SGA score (12.9 vs. 7.6; P &lt; .001), and in health-related quality of life, as measured by an increased FACT-Hep score (45 vs. 52; P = .011). Conclusions: An integrated nutrition and supportive care program was feasible for older adults with advanced pancreatic cancer. Study findings suggest the program may improve nutritional status and quality of life, although the study was underpowered to establish efficacy. A fully powered effectiveness trial is needed to confirm these findings. Future trials may need to provide additional support for electronic food logging or explore alternative methods for food tracking. Clinical trial information: NCT06001268 .

Almost 44 million people are currently living with dementia worldwide. This number is set to increase threefold by 2050, posing a serious threat to the sustainability of healthcare systems. Overuse of antipsychotic drugs for the management of the symptoms of dementia carries negative consequences for patients while also increasing the health expenditures for society. Supportive care (SC) interventions could be considered a safer and potentially cost-saving option. In this paper we provide a systematic review of the existing evidence regarding the cost-effectiveness and cost-utility of SC interventions targeted towards persons living with dementia and their caregivers. A systematic literature review was performed between February 2019 and December 2021 through searches of the databases PubMed (MEDLINE), Cochrane Library, CENTRAL, Embase and PsycINFO. The search strategy was based on PRISMA 2020 recommendations. We considered studies published through December 2021 with no lower date limit. We distinguished between five categories of SC strategies: cognitive therapies, physical activity, indirect strategies (organisational and environmental changes), interventions primarily targeted towards family caregivers, and multicomponent interventions. Of the 5,479 articles retrieved, 39 met the inclusion criteria. These studies analysed 35 SC programmes located at different stages of the dementia care pathway. Eleven studies provided evidence of high cost-effectiveness for seven interventions: two multicomponent interventions; two indirect interventions; two interventions aimed at caregivers of community-dwelling persons with dementia; one community-based cognitive stimulation and occupational programme. We find that the most promising SC strategies in terms of cost-effectiveness are multicomponent interventions (targeted towards both nursing home residents and day-care service users), indirect strategies (group living and dementia care management at home), some forms of tailored occupational therapy, together with some psychosocial interventions for caregivers of community-dwelling persons with dementia. Our results suggest that the adoption of effective SC interventions may increase the economic sustainability of dementia care.

Pancreatic cancer: Best supportive care

12112 Background: We previously reported improvements in access to SC, advance directive completion, and pain control in a RCT comparing a patient navigator-led early SC intervention vs. usual care among patients with newly-diagnosed metastatic cancer in Mexico (NCT03293849). We now present results on healthcare utilization and OS. Methods: Patients were randomized to PN or usual oncology care. Patients in the PN arm received SC interventions by a navigator-led multidisciplinary team (palliative care, physical therapy, geriatrics, psychology) in the first 12 weeks after diagnosis. At 12-weeks, patients allocated to usual care were able to cross-over to PN and receive multidisciplinary SC. We analyzed the number (no.) of emergency room (ER) visits, their cause, and whether they were potentially avoidable (as determined by expert consensus), using descriptive statistics and X2 tests. OS was estimated using the Kaplan-Meier method and the log-rank test. Results: 133 patients (median age 60, range 23-93; 52% male) were randomized (66 PN, 67 control) from 08/17 to 04/18. Median follow-up was 22.8 months. 61% had gastrointestinal tumors, and 45% had a calculated life expectancy ≤6 months. 69% of patients randomized to usual care crossed-over to PN and received SC interventions. 80% of patients attended the ER ≥once (median no. of visits = 2). No difference was found between patients randomized to early SC or usual care in ER visits (2.4 vs. 2.3, p = 0.58). Out of a total 316 ER visits, the most common reason was infections (n = 69, 22%), followed by pain (n = 40, 13%), and indwelling catheter-related complications (n = 23, 7%). 41% of ER visits were considered as potentially avoidable, with no difference in avoidable visits found between arms (1.7 vs. 1.7, p = 0.49). No differences between arms were found in no. of hospitalizations (0.8 vs. 0.6 p = 0.82). Survival results were assessed after 64% of patients had died (n = 85), finding no statistically significant OS difference between the early SC intervention and the usual care arms (11.0 vs 13.0 months, p = 0.77) Conclusions: In the context of a limited-resource healthcare system, the early delivery of SC did not improve healthcare utilization, reduce avoidable ER visits, or prolong OS compared to the implementation of SC at a later time, which might be partially explained by the unavailability of hospice or home care, and by high rates of cross-over between arms. Clinical trial information: NCT03293849 .

ObjectivesPatients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer. This survey aimed to describe their experiences of care and supportive care needs to inform future service...

Understanding the supportive care and unmet care needs of patients with melanoma is essential for informing the development or evaluation of supportive care services and interventions for patients with melanoma. Three electronic databases (CINAHL, Medline and PsycINFO) were searched from 2000 to November 2019 to identify eligible quantitative and qualitative studies. The quality of evidence was assessed using the Mixed Methods Appraisal Tool. Fourteen studies (10 quantitative, three qualitative and one mixed-methods) were included. Informational care and unmet needs were the most commonly reported in patients with melanoma, followed by psychological, then social and physical. Findings were consistent between quantitative and qualitative studies; however, findings from qualitative data complimented those from quantitative data by providing more depth and insight into the prevalence, effects and associations of the different care needs. Patients' care and unmet needs were found to also be present all throughout their cancer journey and vary according to the stage throughout. Melanoma-specific care and unmet care needs were identified most commonly in the informational domain, followed by psychological, social and physical domains. Oncology practitioners should consider enhancing their supportive care interventions throughout the journey of patient with melanoma to reduce or address their unmet needs. The results of this mixed-methods systematic review warrant further research using robust study designs, melanoma-specific validated outcome measures and complete reporting of data in terms of disease stage.

PurposeIt is plausible that patients with pancreatic cancer experience fear of tumor recurrence or progression (FOP). The aim of this study was to compare FOP in patients with pancreatic cancer treated with surgical resection, palliative systemic treatment, or best supportive care (BSC) and analyze the association between quality of life (QoL) and FOP and the effect of FOP on overall survival (OS).MethodsThis study included patients diagnosed with pancreatic cancer between 2015 and 2018, who participated in the Dutch Pancreatic Cancer Project (PACAP). The association between QoL and WOPS was assessed with logistic regression analyses. OS was evaluated using Kaplan–Meier curves with the log-rank tests and multivariable Cox proportional hazard analyses adjusted for clinical covariates and QoL.ResultsOf 315 included patients, 111 patients underwent surgical resection, 138 received palliative systemic treatment, and 66 received BSC. Patients who underwent surgical resection had significantly lower WOPS scores (i.e., less FOP) at initial diagnosis compared to patients who received palliative systemic treatment or BSC only (P < 0.001). Better QoL was independently associated with the probability of having a low FOP in the BSC (OR 0.95, 95% CI 0.91–0.98) but not in the surgical resection (OR 0.97, 95% CI 0.94–1.01) and palliative systemic treatment groups (OR 0.97, 95% CI 0.94–1.00). The baseline WOPS score was not independently associated with OS in any of the subgroups.ConclusionGiven the distress that FOP evokes, FOP should be explicitly addressed by health care providers when guiding pancreatic cancer patients through their treatment trajectory, especially those receiving palliative treatment or BSC.

4132 Background: Patients with pancreatic cancer run a considerable risk of disease progression or, after resection, disease recurrence, ultimately leading to death. Therefore, it is plausible that pancreatic cancer patients experience fear of cancer recurrence or progression (FOP). The aim of this study was to compare FOP in patients with pancreatic cancer treated with surgery, palliative systemic treatment or best supportive care (BSC), and examine the association between quality of life (QoL) and FOP and between FOP and overall survival (OS), respectively. Methods: This prospective multicenter cohort study included patients diagnosed with pancreatic cancer between 2015 and 2018, who participated in the Dutch Pancreatic Cancer Project (PACAP). Data on FOP (worry of cancer progression scale [WOPS]) and QoL (EORTC QLQ-C30 summary scale score), were obtained from the PACAP database. Data regarding patient and tumor characteristics were derived from the nationwide Netherlands Cancer Registry. The association between QoL and WOPS was assessed with logistic regression analysis. OS was evaluated using Kaplan Meier curves with log-rank test and multivariable Cox proportional hazard analyses. Results: In total, 315 patients were included, of whom 111 patients underwent surgery, 138 received palliative systemic treatment, and 66 BSC. WOPS scores tended to decrease and stabilize over time in all subgroups. Patients who underwent surgery had significantly lower WOPS scores (i.e. less FOP) at initial diagnosis compared to patients in the palliative systemic treatment and BSC group (p = 0.004). Higher QoL scores were independently associated with a lower probability of high WOPS scores in patients receiving BSC only (OR 0.95, P = 0.006). Baseline WOPS score was not independently associated with OS. Conclusions: Pancreatic cancer patients reported FOP at diagnosis, which decreased and stabilized over time. Given the distress that FOP evokes, FOP should be explicitly addressed by health care providers when guiding pancreatic cancer patients through their treatment trajectory, especially those receiving palliative treatment or BSC.

Although self-management is essential for slowing the progression of chronic kidney disease and improving quality of life, patients continue to face substantial and varied challenges in managing their condition. Existing research has identified barriers to self-management but less is known about the barriers and facilitators experienced by patients with advanced chronic kidney disease not yet receiving kidney replacement therapy (dialysis and transplantation). Furthermore, few studies have been consumer-led or have integrated clinician and patient perspectives in a shared discussion environment. To explore the barriers to, and facilitators of, chronic kidney disease self-management from the perspectives of key stakeholders, using a consumer-led qualitative approach. Patients with chronic kidney disease and clinicians were purposively sampled from a large renal service in South Australia to participate in a focus group interview, co-facilitated by a person living with chronic kidney disease. Three, 2-h focus group interviews involving 11 renal consumers and six renal clinicians were undertaken following a semi-structured interview guide that was co-developed with renal consumers and transcribed verbatim. Transcripts were coded and analysed using inductive thematic analysis. Six themes emerged: patient individuality, information and education resources, disease and treatment burden, healthcare team services, patient-clinician relationships, and teaching and learning strategies. Identified barriers included patient passivity, limited chronic kidney disease awareness, fragmented care, impersonal clinical approaches, and physical/emotional distress. Facilitators included positive attitudes, goal setting, trust and satisfaction with clinicians, effective communication, shared decision-making, person-centred care and caregiver support. This study identified that chronic kidney disease self-management is influenced by interacting personal factors, relational factors and systemic factors. These qualitative insights demonstrate that patients' ability to self-manage is shaped not only by knowledge, but by emotional burden, confidence, and the quality of relationships within the healthcare system. Consumer-led approaches that reflect these lived experiences may enhance the relevance and acceptability of future self-management support.