Astrid W. Oosten

Background: Identifying hospital inpatients who are approaching the end of life is essential for providing optimal palliative care. The study aims to determine the prevalence of hospital inpatients with a potentially limited life expectancy (< 12 months) using the surprise question, and to assess the extent of specialist palliative care team (PCT) involvement in this population. Methods: On the 16 ^th of April 2021, we conducted a multi-center, cross-sectional, nationwide study in Dutch hospitals using a flash mob design. Nurses and physicians independently answered the surprise question (SQ) for all adult hospital inpatients: “Would you be surprised if this patient died within the next 12 months?”. If answered negatively, they were then asked to indicate if they estimated life expectancy to be less than 3 months, and whether PCTs were involved. Results: In total, 48 of 68 (70%) Dutch hospitals participated in the study. Nurses and physicians filled out 16,607 questionnaires regarding 8,768 patients. Of 8,768 patients, 80% were admitted because of non-malignant diseases. Physicians answered the SQ negatively for 2,826 (35%) patients. Physicians indicated that PCT was involved in 6% of these patients and that PCT referral was considered useful for another 6%. For patients with an estimated life expectancy < 3 months (n=582), these proportions increased to 15% and 13%, respectively. Conclusions: A third of all hospital inpatients had a possible life-limiting condition and may benefit from palliative care and advance care planning. Future studies should focus on exploring the palliative care needs of hospital inpatients and possible benefits of timely implementation of palliative care.

Purpose: The HOLISTIC study assessed health-related quality of life (HRQoL) in advanced soft tissue sarcoma (STS) patients receiving first-line palliative chemotherapy. The secondary objective discussed here is to evaluate baseline self-reported financial difficulties and associated sociodemographic factors and global health status (GHS), compare financial toxicity between patients in the United Kingdom (UK) and the Netherlands (NL), and evaluate the consequences of financial toxicity. Methods: This prospective study included 72 UK and 65 NL patients. Financial toxicity was evaluated by the financial difficulties scale of the EORTC QLQ-C30. Associated factors (i.e., country, gender, educational level, relationship status, employment changes, income, age, time since diagnosis, and GHS) were analyzed using descriptive analysis, Chi-square tests, and univariate and multivariate logistic regression. Results: Median participant age was 62 (range: 27–79) years, and gender distribution was equal. 58% of UK and 48% of NL patients had no income or a monthly income ≤ £/€ 2000 (p = 0.417). Self-reported additional costs for medication (31% vs. 9%, p < 0.001) and parking (75% vs. 41%, p < 0.001) were more prevalent among Dutch than UK patients. Travel expenses were similar: 68% in NL and 66% in UK. Univariate analysis showed an increased risk of financial toxicity in UK patients (40% vs. 22% [NL], p = 0.023), single patients (52% vs. 27% [with partner], p = 0.014), and those with a change in employment status (46% vs. 24% [no change], p = 0.019). In UK patients, multivariate analysis indicated lower odds for financial toxicity for patients with a high income (OR 0.207, p = 0.031) and higher odds for patients with a worse GHS (OR 5.171, p = 0.012), whereas in NL, higher odds were seen for male (OR 13.286, p = 0.027) and single (OR 41.735, p = 0.007) patients. Conclusion: Financial toxicity was common among advanced STS already at the start of palliative chemotherapy, influenced by factors such as residence country, income, relationship status, gender, and GHS. Timely interventions are needed to address financial challenges in this population.

Background: Neoadjuvant imatinib therapy plays a crucial role in the management of gastrointestinal stromal tumors (GISTs), but its impact across various mutational profiles remains uncertain. Objective: The aim of this study is to describe the clinicopathological features and to assess the response and surgical outcomes of neoadjuvant imatinib in GIST patients exhibiting diverse mutational profiles. Methods: We conducted a retrospective study, extracting data from the Dutch GIST Registry, including patients treated with neoadjuvant imatinib. Response rate was the primary outcome, and secondary outcomes were the time on neoadjuvant treatment and resection margins (R0 vs. R1/R2), respectively. Results: Between 2009 and 2021, 326 patients were treated with neoadjuvant imatinib, of which 264 (80.9%) underwent resection. A total of 197 (74.6%) of them had a KIT-exon 11 mutation, 19 (7.3%) had other KIT mutations, 10 (3.8%) had PDGFRA D842 mutations, 21 (6.8%) had other PDGFRA mutations, 2 (0.7%) had NTRK mutation, 1 (0.4%) had an SDH mutation, and 17 (6.4%) had WT GISTs. Patients with KIT-exon 11 mutations demonstrated a higher rate of partial response to imatinib (60.5% vs. 33.3%; p = 0.00). A positive resection margin (R1 or R2) was observed in 14 (21.2%) patients with a non-KIT exon 11 mutations and in 11 (5.5%) patients with a KIT-exon 11 mutation (p = 0.00). Moreover, non-KIT exon 11 mutation patients had a shorter median duration of neoadjuvant therapy (5.3 months, range 0.5–21.0) compared to patients with a KIT exon 11 mutation (8.8 months, range 0.2–31.3; p < 0.001). Conclusions: Our study highlights the variability in treatment response associated with different GIST mutational profiles. Patients with a KIT-exon-11 mutation tended to respond more favorably to neoadjuvant imatinib in terms of partial response and surgical outcomes.

Purpose: This study aims to (1) explore the prevalence of patient-reported financial difficulties among GIST patients, differentiating between those currently undergoing tyrosine kinase inhibitor (TKI) treatment and those who are not; (2) investigate associations between financial difficulties and sociodemographic and clinical characteristics, work, cancer-related concerns, anxiety and depression and (3) study the impact of financial difficulties on health-related quality of life. Methods: A cross-sectional study was conducted among Dutch GIST patients diagnosed between 2008 and 2018, who were invited to complete a one-time survey between September 2020 and June 2021. Patients completed nine items of the EORTC item bank regarding financial difficulties, seven work-related questions, the Hospital Anxiety and Depression Scale, Cancer Worry Scale and EORTC QLQ-C30. Results: In total, 328 GIST patients participated (response rate 63.0%), of which 110 (33.8%) were on TKI treatment. Patients currently treated with TKIs reported significantly more financial difficulties compared to patients not on TKIs (17.3% vs 8.7%, p = 0.03). The odds of experiencing financial difficulties was 18.9 (95% CI 1.7–214.7, p = 0.02) times higher in patients who were less able to work due to their GIST diagnosis. Patients who experienced financial difficulties had significantly lower global quality of life and functioning, and more frequently reported psychological symptoms as compared to patients who did not report financial difficulties. Conclusion: Even in a country where the costs of TKIs and follow-up care are covered by health insurance, financial difficulties can be present in GIST patients, especially in patients on TKI treatment, and may negatively influence the quality of life.

Background: Increasingly, social media is being recognized as a potential resource for patient-generated health data, for example, for pharmacovigilance. Although the representativeness of the web-based patient population is often noted as a concern, studies in this field are limited. Objective: This study aimed to investigate the sample bias of patient-centered social media in Dutch patients with gastrointestinal stromal tumor (GIST). Methods: A population-based survey was conducted in the Netherlands among 328 patients with GIST diagnosed 2-13 years ago to investigate their digital communication use with fellow patients. A logistic regression analysis was used to analyze clinical and demographic differences between forum users and nonusers. Results: Overall, 17.9% (59/328) of survey respondents reported having contact with fellow patients via social media. Moreover, 78% (46/59) of forum users made use of GIST patient forums. We found no statistically significant differences for age, sex, socioeconomic status, and time since diagnosis between forum users (n=46) and nonusers (n=273). Patient forum users did differ significantly in (self-reported) treatment phase from nonusers (P=.001). Of the 46 forum users, only 2 (4%) were cured and not being monitored; 3 (7%) were on adjuvant, curative treatment; 19 (41%) were being monitored after adjuvant treatment; and 22 (48%) were on palliative treatment. In contrast, of the 273 patients who did not use disease-specific forums to communicate with fellow patients, 56 (20.5%) were cured and not being monitored, 31 (11.3%) were on curative treatment, 139 (50.9%) were being monitored after treatment, and 42 (15.3%) were on palliative treatment. The odds of being on a patient forum were 2.8 times as high for a patient who is being monitored compared with a patient that is considered cured. The odds of being on a patient forum were 1.9 times as high for patients who were on curative (adjuvant) treatment and 10 times as high for patients who were in the palliative phase compared with patients who were considered cured. Forum users also reported a lower level of social functioning (84.8 out of 100) than nonusers (93.8 out of 100; P=.008). Conclusions: Forum users showed no particular bias on the most important demographic variables of age, sex, socioeconomic status, and time since diagnosis. This may reflect the narrowing digital divide. Overrepresentation and underrepresentation of patients with GIST in different treatment phases on social media should be taken into account when sourcing patient forums for patient-generated health data. A further investigation of the sample bias in other web-based patient populations is warranted.

Oxycodone is frequently used for treating cancer-related pain, while not much is known about the factors that influence treatment outcomes in these patients. We aim to unravel these factors by developing a population-pharmacokinetic model to assess the pharmacokinetics of oxycodone and its metabolites in cancer patients, and to associate this with pain scores, and adverse events. Hospitalized patients with cancer-related pain, who were treated with oral oxycodone, could participate. Pharmacokinetic samples and patient-reported pain scores and occurrence and severity of nine adverse events were taken every 12 h. In 28 patients, 302 pharmacokinetic samples were collected. A one-compartment model for oxycodone and each metabolite best described oxycodone, nor-oxycodone, and nor-oxymorphone pharmacokinetics. Furthermore, oxycodone exposure was not associated with average and maximal pain scores, and oxycodone, nor-oxycodone, and nor-oxymorphone exposure were not associated with adverse events (all p > 0.05). This is the first model to describe the pharmacokinetics of oxycodone including the metabolites nor-oxycodone and nor-oxymorphone in hospitalized patients with cancer pain. Additional research, including more patients and a more timely collection of pharmacodynamic data, is needed to further elucidate oxycodone (metabolite) pharmacokinetic/pharmacodynamic relationships. This model is an important starting point for further studies to optimize oxycodone dosing regiments in patients with cancer-related pain.