Empowerment of Cancer Survivors Through Information Technology: An Integrative Review.

BACKGROUND: Patient empowerment may be an effective approach to strengthen the role of cancer survivors and to reduce the burden on health care. However, it is not well conceptualized, notably in oncology. Furthermore, it is unclear to what extent information technology (IT) services can contribute to empowerment of cancer survivors. OBJECTIVE: We aim to define the conceptual components of patient empowerment of chronic disease patients, especially cancer survivors, and to explore the contribution of existing and new IT services to promote empowerment. METHODS: Electronic databases were searched to identify theoretical and empirical articles regarding empowerment. We extracted and synthesized conceptual components of patient empowerment (ie, attributes, antecedents, and consequences) according to the integrated review methodology. We identified recent IT services for cancer survivors by examining systematic reviews and a proposed inventory of new services, and we related their features and effects to the identified components of empowerment. RESULTS: Based on 26 articles, we identified five main attributes of patient empowerment: (1) being autonomous and respected, (2) having knowledge, (3) having psychosocial and behavioral skills, (4) perceiving support from community, family, and friends, and (5) perceiving oneself to be useful. The latter two were specific for the cancer setting. Systematic reviews of IT services and our additional inventory helped us identify five main categories: (1) educational services, including electronic survivorship care plan services, (2) patient-to-patient services, (3) electronic patient-reported outcome (ePRO) services, (4) multicomponent services, and (5) portal services. Potential impact on empowerment included knowledge enhancement and, to a lesser extent, enhancing autonomy and skills. Newly developed services offer promising and exciting opportunities to empower cancer survivors, for instance, by providing tailored advice for supportive or follow-up care based on patients' input. CONCLUSIONS: We identified five main components of empowerment and showed that IT services may especially contribute to empowerment by providing knowledge. The components of empowerment could be used to develop IT services for cancer survivors. It is important to take into account patients' needs, follow up on these needs, and create a service that is attractive and easy to use.

Improvement of perioperative outcomes of gastric gastrointestinal stromal tumour (GIST) resections and the influence of minimal invasive surgery.

BACKGROUND: Safety of minimally invasive surgery (MIS) for gastrointestinal stromal tumours (GISTs) is still under debate since it might increase the risk of tumour rupture, especially in larger tumours. The aim of this study was to investigate trends in treatment and perioperative outcomes of patients undergoing resections of gastric GISTs over time. METHODS: This was a multicentre retrospective study of consecutive patients who underwent wedge resection or partial gastrectomy for localized gastric GIST at five GIST reference centres between January 2009 and January 2022. To evaluate changes in treatment and perioperative outcomes over time, patients were divided into four equal periods. Perioperative outcomes were analysed separately and as a novel composite measure textbook outcome (TO). RESULTS: In total 385 patients were included. Patient and tumour characteristics did not change over time, except for median age (62-65-68-68 years, p = 0.002). The proportion of MIS increased (4.0%-9.8%-37.4%-53.0 %, p < 0.001). Postoperative complications (Clavien Dindo ≥2; 22%-15%-11%-10 %, p = 0.146), duration of admission (6-6-5-4 days, p < 0.001) and operating time (92-94-77-73 min, p = 0.007) decreased over time while TO increased (54.0%- 52.7%-65.9%-76.0 %, p < 0.001). No change was seen in perioperative ruptures (6.0%- 3.6%-1.6%-3.0 %, p = 0.499). MIS was correlated with less CD ≥ 2 complications (p = 0.006), shorter duration of admission (p < 0.001) and more TO (p < 0.001). Similar results were observed in tumours ≤5 cm and >5 cm. CONCLUSION: A larger percentage of gastric GIST were treated with MIS over time. MIS was correlated with less complications, shorter duration of admission and more TO. Tumour rupture rates remained low over time.

Patterns of care over 10 years in young breast cancer patients in the Netherlands, a nationwide population-based study.

INTRODUCTION: Each year, around 600 young (<40 years) breast cancer (BC) patients are registered in the national NABON Breast Cancer Audit (NBCA). The aim of this study is to compare patient and treatment characteristics of young and older age BC patients over time with a focus on outcome of quality indicators (QIs). Furthermore, we analysed whether de-escalation trends of treatment can be recognized to the same degree in both patient groups. MATERIAL AND METHODS: From October 2011 to October 2020 all patients treated for stage I-III invasive BC were included. Tumour characteristics, treatment variables and outcome of QIs of two age categories young (<40 years) and older patient (≥40 years) were analysed. RESULTS: In total 114,700 patients were included: 4.6% young patients and 95.4% older patients. Young patients more often presented with a palpable mass, higher stage, and triple-negative BC. Overall, young patients more often started with neoadjuvant systemic treatment (NST) (54.3% vs. 18.6%) and a greater proportion of the young patients retained their breast contour after surgery (73.5% vs. 69.3%). De-escalation trends such as decrease in axillary lymph node dissections and in the use of boost were observed. The omission of radiation treatment after breast conserving surgery was only observed in older patients. CONCLUSION: Although this study shows that young women more often present with unfavourable tumours, therapeutic procedures are performed with a higher adherence to the QIs than for older patients and young women do benefit from some de-escalation trends to the same extend as older patients.

The Dutch Acute Stroke Audit: Benchmarking acute stroke care in the Netherlands.

INTRODUCTION: In the nationwide Dutch Acute Stroke Audit (DASA), consecutive patients with acute ischaemic stroke (AIS) and intracranial haemorrhage (ICH) are prospectively registered. Acute stroke care is a rapidly evolving field in which intravenous thrombolysis (IVT) and intra-arterial thrombectomy (IAT) play a crucial role in increasing odds of favourable outcome. The DASA can be used to assess the variation in care between hospitals and develop 'best practice' in acute stroke care. Patients and methods: We describe the initiation and design of the DASA as well as the results from 2015 and 2016. RESULTS: In 2015 and 2016, 55,854 patients with AIS and 7727 patients with ICH were registered in the DASA. Treatment with IVT was administered to 10,637 patients (with an increase of 1.3% in 2016) and 1740 patients underwent IAT (with an increase of 1% in 2016). Median door-to-needle time for IVT and median door-to-groin time for IAT have decreased from 27 to 25 min and 66 to 64 min, respectively. Mortality during admission was 4.9% in patients with AIS, whereas 26% of patients with ICH died. Modified Rankin Scale score at three months was registered in 49% of AIS patients and 45% of ICH patients. DISCUSSION: During the nationwide DASA, time to treatment is reduced for IVT as well as IAT. With the rapidly evolving treatment of acute stroke care, the DASA can be used to monitor the quality provided on patient- and hospital level. CONCLUSION: Increasing completeness of registration of the outcome, in combination with adjustment for patient-related factors, is necessary to define and further improve the quality of the acute stroke care.

Anastomotic Leakage and Interval between Preoperative Short-Course Radiotherapy and Operation for Rectal Cancer.

BACKGROUND: Short-course preoperative radiotherapy is indicated in patients with resectable rectal cancer to control local recurrence. Although no clear evidence is available, short-course radiotherapy with operation within a week is common practice. The aim of this study was to investigate the impact of timing of operation for rectal cancer after short-course radiotherapy on anastomotic leakage. STUDY DESIGN: Data from the Dutch Colorectal Audit were used. All patients who received short-course preoperative radiotherapy and underwent elective operation within 14 days for rectal cancer between January 1, 2011 and December 31, 2016 were included. Interval between radiotherapy and operation was calculated by extracting date of start of radiotherapy from the date of operation. Patients were divided into short interval (<4 days) and long interval (4 or more days). The interval and other patient or perioperative parameters were included in univariable and multivariable logistic regression analyses to identify independent associations with anastomotic leakage. RESULTS: In total, 2,131 patients were eligible for analysis: 1,055 (49.5%) patients had operations <4 days after radiotherapy and 1,076 (50.5%) patients had operations after 4 or more days. One hundred and eighty-five (8.7%) patients experienced anastomotic leakage. The incidence of anastomotic leakage was significantly higher in patients who underwent operation within <4 days (10.1% vs 7.2%; p = 0.018). In the multivariable analysis, an interval of <4 days was significantly associated with anastomotic leakage (odds ratio 1.438; 95% CI 1.054 to 1.962; p = 0.022). CONCLUSIONS: Elective surgery for rectal cancer <4 days after preoperative short-course radiotherapy resulted in an increase of anastomotic leakage.

Supporting Lung Cancer Patients With an Interactive Patient Portal: Feasibility Study.

BACKGROUND: MyAVL is an interactive portal for cancer patients that aims to support lung cancer patients. OBJECTIVE: We aimed to evaluate the feasibility and usability of the patient portal and generate preliminary evidence on its impact. METHODS: Lung cancer patients currently or recently treated with curative intent could use MyAVL noncommittally for 4 months. Feasibility, usability, and preliminary impact (ie, patient activation, quality of life, and physical activity) were studied by means of questionnaires, a focus group, and analysis of user log data. RESULTS: We included 37 of 123 eligible patients (mean age 59.6 years). The majority of responses (82%) were positive about using MyAVL, 69% saw it as a valuable addition to care, and 56% perceived increased control over their health. No positive effects could be substantiated on the impact measures. CONCLUSIONS: MyAVL appears to be a feasible and user-friendly, multifunctional eHealth program for a selected group of lung cancer patients. However, it needs further improvements to positively impact patient outcomes.

eHealth for Breast Cancer Survivors: Use, Feasibility and Impact of an Interactive Portal.

BACKGROUND: MijnAVL is an interactive portal including patient education, overview of appointments, access to the electronic medical records (EMR), patient-reported outcomes, plus feedback and physical activity support. OBJECTIVE: With this study we aimed to evaluate the use, feasibility, and impact of MijnAVL among breast cancer survivors. METHODS: We included survivors currently or recently treated with curative intent, who completed questions on sociodemographics, patient activation (PAM), quality of life (SF-36), and physical activity (IPAQ). MijnAVL could be used noncommittally for four months. Log data were collected retrospectively and participants completed questions on acceptability, satisfaction, and the PAM, SF-36 and IPAQ. RESULTS: Ninety-two women (mean age 49.5 years, 59% on-treatment) participated, with a mean number of logins of 8.7. Overview of appointments (80% of participants) and access to the EMR (90%) were most frequently used and most highly valued. Average website user satisfaction was 3.8 on a 5-point scale. Although participants reported having more knowledge and experiencing more control of their situation after using MijnAVL, PAM scores did not change significantly. Three domains of the SF-36 (role functioning - emotional, mental health, and social functioning) and median vigorous physical activity improved significantly over time. The burden of MijnAVL for professionals was limited. CONCLUSIONS: User experiences were positive and exposure to MijnAVL was accompanied by improvements in three quality of life domains and vigorous physical activity. Tailored features may be needed to enhance the usefulness and efficacy of MijnAVL. Research with a controlled design is needed to confirm our findings.

Development of MijnAVL, an Interactive Portal to Empower Breast and Lung Cancer Survivors: An Iterative, Multi-Stakeholder Approach.

BACKGROUND: MijnAVL (MyAVL) is an interactive portal being developed to empower cancer survivors. Literature review and focus groups yielded the selection of features such as access to the electronic medical record (EMR), patient reported outcomes (PROs) and related feedback, and a physical activity support program. OBJECTIVE: Our aim was to present a final design of MijnAVL based on (1) health professionals' evaluation of proposed features, (2) cancer survivors' evaluation of a first draft, and (3) cancer survivors' evaluation of a functional online prototype. METHODS: Professionals from various disciplines gave input to the content of and procedures related to MijnAVL. Subsequently, 16 cancer survivors participated in an interview to evaluate content and graphic design of a first draft (shown with screenshots). Finally, 7 survivors participated in a usability test with a fully functional prototype. They performed predefined tasks (eg, logging in, finding a test result, completing a questionnaire) while thinking aloud. Descriptive statistics and simple content analysis were used to analyze the data of both the interviews and the usability tests. RESULTS: Professionals supported access to the EMR (eg, histology reports, lab results, and their letters to general practitioners). They also informed the development of PROs and the physical activity support program. Based on the first draft, survivors selected the preferred graphic design, approved the features and provided suggestions for the content (eg, explanation of medical jargon, more concise texts, notification by emails). Usability tests revealed that it was relatively easy to navigate the website and use the different features. Recommendations included, among others, a frequently asked questions section and the use of hyperlinks between different parts of the website. CONCLUSIONS: The development of MijnAVL, an interactive portal to empower breast and lung cancer survivors, was performed iteratively and involved multiple groups of end-users. This approach resulted in a usable and understandable final version. Its effectiveness should be determined in further research.