Background: Follow‑up of curatively treated primary breast cancer patients consists of surveillance and aftercare and is currently mostly the same for all patients. A more personalized approach, based on patients’ individual risk of recurrence and personal needs and preferences, may reduce patient burden and reduce (healthcare) costs. The NABOR study will examine the (cost‑)effectiveness of personalized surveillance (PSP) and personalized aftercare plans (PAP) on patient‑reported cancer worry, self‑rated and overall quality of life and (cost‑)effectiveness. Methods: A prospective multicenter multiple interrupted time series (MITs) design is being used. In this design, 10 participating hospitals will be observed for a period of eighteen months, while they ‑stepwise‑ will transit from care as usual to PSPs and PAPs. The PSP contains decisions on the surveillance trajectory based on individual risks and needs, assessed with the ‘Breast Cancer Surveillance Decision Aid’ including the INFLUENCE prediction tool. The PAP contains decisions on the aftercare trajectory based on individual needs and preferences and available care resources, which decision‑making is supported by a patient decision aid. Patients are non‑metastasized female primary breast cancer patients (N= 1040) who are curatively treated and start follow‑up care. Patient reported outcomes will be measured at five points in time during two years of follow‑up care (starting about one year after treatment and every six months thereafter). In addition, data on diagnostics and hospital visits from patients’ Electronical Health Records (EHR) will be gathered. Primary outcomes are patient‑reported cancer worry (Cancer Worry Scale) and over‑all quality of life (as assessed with EQ‑VAS score). Secondary outcomes include health care costs and resource use, health‑related quality of life (as measured with EQ5D‑5L/SF‑12/EORTC‑QLQ‑C30), risk perception, shared decision‑making, patient satisfaction, societal participation, and cost‑effectiveness. Next, the uptake and appreciation of personalized plans and patients’ experiences of their decision‑making process will be evaluated. Discussion: This study will contribute to insight in the (cost‑)effectiveness of personalized follow‑up care and contributes to development of uniform evidence‑based guidelines, stimulating sustainable implementation of personalized surveillance and aftercare plans. Trial registration: Study sponsor: ZonMw. Retrospectively registered at ClinicalTrials.gov (2023), ID: NCT05975437.
MULTIFILE
Purpose: Breast cancer follow-up (surveillance and aftercare) varies from one-size-fits-all to more personalised approaches. A systematic review was performed to get insight in existing evidence on (cost-)efectiveness of personalised follow-up. Methods: PubMed, Scopus and Cochrane were searched between 01–01-2010 and 10–10-2022 (review registered in PROSPERO:CRD42022375770). The inclusion population comprised nonmetastatic breast cancer patients≥18 years, after completing curative treatment. All intervention-control studies studying personalised surveillance and/or aftercare designed for use during the entire follow-up period were included. All review processes including risk of bias assessment were performed by two reviewers. Characteristics of included studies were described. Results: Overall, 3708 publications were identifed, 64 full-text publications were read and 16 were included for data extraction. One study evaluated personalised surveillance. Various personalised aftercare interventions and outcomes were studied. Most common elements included in personalised aftercare plans were treatment summaries (75%), follow-up guidelines (56%), lists of available supportive care resources (38%) and PROs (25%). Control conditions mostly comprised usual care. Four out of seven (57%) studies reported improvements in quality of life following personalisation. Six studies (38%) found no personalisation efect, for multiple outcomes assessed (e.g. distress, satisfaction). One (6.3%) study was judged as low, four (25%) as high risk of bias and 11 (68.8%) as with concerns. Conclusion: The included studies varied in interventions, measurement instruments and outcomes, making it impossible to draw conclusions on the efectiveness of personalised follow-up. There is a need for a definition of both personalised surveillance and aftercare, whereafter outcomes can be measured according to uniform standards.
DOCUMENT
Research on follow-up outcomes of systemic interventions for family members with an intellectual disability is scarce. In this study, short-term and long-term follow-up outcomes of multisystemic therapy for adolescents with antisocial or delinquent behaviour and an intellectual disability (MST-ID) are reported. In addition, the role of parental intellectual disability was examined. Outcomes of 55 families who had received MST-ID were assessed at the end of treatment and at 6-month, 12-month and 18-month follow-up. Parental intellectual disability was used as a predictor of treatment outcomes. Missing data were handled using multiple imputation. Rule-breaking behaviour of adolescents declined during treatment and stabilized until 18 months post-treatment. The presence or absence of parental intellectual disability did not predict treatment outcomes. This study was the first to report long-term outcomes of MST-ID. The intervention achieved similar results in families with and without parents with an intellectual disability.
DOCUMENT
Purpose: The increasing number of cancer survivors has heightened demands on hospital-based follow-up care resources. To address this, involving general practitioners (GPs) in oncological follow-up is proposed. This study explores secondary care providers’ views on integrating GPs into follow-up care for curatively treated breast and colorectal cancer survivors. Methods: A qualitative exploratory study was conducted using semi-structured interviews with Dutch medical specialists and nurse practitioners. Interviews were recorded, transcribed verbatim, and analyzed using thematic analysis by two independent researchers. Results: Fifteen medical specialists and nine nurse practitioners participated. They identified barriers such as re-referral delays, inexperience to perform structured follow-up, and worries about the lack of oncological knowledge among GPs. Benefits included the GPs’ accessibility and their contextual knowledge. For future organization, they emphasized the need for hospital logistics changes, formal GP training, sufficient case-load, proper staffing, remuneration, and time allocation. They suggested that formal GP involvement should initially be implemented for frail older patients and for prevalent cancer types. Conclusions: The interviewed Dutch secondary care providers generally supported formal involvement of primary care in cancer follow-up. A well-organized shared-care model with defined roles and clear coordination, supported by individual patients, was considered essential. This approach requires logistics adaptation, resources, and training for GPs. Implications for cancer survivors: Integrating oncological follow-up into routine primary care through a shared-care model may lead to personalized, effective, and efficient care for survivors because of their long-term relationships with GPs.
DOCUMENT
The aim of this paper is to design and test a smartphone application which supports personalized running experiences for less experienced runners. As a result of a multidisciplinary three-step design approach Inspirun was developed. Inspirun is a personalized running-application for Android smartphones that aims to fill the gap between running on your own (static) schedule, and having a personal trainer that accommodates the schedule to your needs and profile. With the use of GPS and Bluetooth heart rate monitor support, a user's progress gets tracked. The application adjusts the training schedule after each training session, motivating the runner without a real life coach. Results from three user studies are promising; participants were very satisfied with the personalized approach, both in the profiling and de adaptation of their training scheme.
DOCUMENT
Background: The immunization uptake rates in Pakistan are much lower than desired. Major reasons include lack of awareness, parental forgetfulness regarding schedules, and misinformation regarding vaccines. In light of the COVID-19 pandemic and distancing measures, routine childhood immunization (RCI) coverage has been adversely affected, as caregivers avoid tertiary care hospitals or primary health centers. Innovative and cost-effective measures must be taken to understand and deal with the issue of low immunization rates. However, only a few smartphone-based interventions have been carried out in low- and middle-income countries (LMICs) to improve RCI. Objective: The primary objectives of this study are to evaluate whether a personalized mobile app can improve children’s on-time visits at 10 and 14 weeks of age for RCI as compared with standard care and to determine whether an artificial intelligence model can be incorporated into the app. Secondary objectives are to determine the perceptions and attitudes of caregivers regarding childhood vaccinations and to understand the factors that might influence the effect of a mobile phone–based app on vaccination improvement. Methods: A mixed methods randomized controlled trial was designed with intervention and control arms. The study will be conducted at the Aga Khan University Hospital vaccination center. Caregivers of newborns or infants visiting the center for their children’s 6-week vaccination will be recruited. The intervention arm will have access to a smartphone app with text, voice, video, and pictorial messages regarding RCI. This app will be developed based on the findings of the pretrial qualitative component of the study, in addition to no-show study findings, which will explore caregivers’ perceptions about RCI and a mobile phone–based app in improving RCI coverage. Results: Pretrial qualitative in-depth interviews were conducted in February 2020. Enrollment of study participants for the randomized controlled trial is in process. Study exit interviews will be conducted at the 14-week immunization visits, provided the caregivers visit the immunization facility at that time, or over the phone when the children are 18 weeks of age. Conclusions: This study will generate useful insights into the feasibility, acceptability, and usability of an Android-based smartphone app for improving RCI in Pakistan and in LMICs.
DOCUMENT
Background: To be accountable to laws and regulations, healthcare professionals spend more than 40% of their time on administrative tasks. The Compulsory Mental Healthcare Act (CMHA) was introduced in Dutch mental healthcare in 2020. It was hypothesized that this legislative amendment would raise the administrative burden for some care professionals. Pilot studies in 2020 and 2021 visualized the exponentially rise of the administrative burden for care professionals, especially psychiatrists due to the transition. However the total response was too small and not generalizable. Aim: gain more nationwide insight in the hypothesized raise of administrative burden of psychiatrists due to the implementation of the CMHA. Method: Under the leadership of an advisory board of three medical director psychiatrists, a Likert scale questionnaire was further developed to investigate the administrative burden of psychiatrists in the Netherlands before and after transition. Open-ended questions provided the opportunity for feedback from the psychiatrists. The study was supported by the Department of Medical Directors (DMD) of The Netherlands Psychiatric Association (NPA). Results: all mental health institutions members of the DMD of the NPA received an invitation to participate. 14 institutions (total N=158) responded. The data show a significant change in the time spent on administrative tasks, the usefulness of the administrative actions, the fit for use and ease of use of supporting systems. The forementioned all decreased significantly after the implementation. Conclusion and discussion: Psychiatrists spend more time on administration than before the legislative amendment instead of helping vulnerable patients. None of the institutions has been able to use the transition to its advantage given the time spent on administrative tasks and the usefulness of these tasks. This is an unacceptable development in the field of mental health in the Netherlands and should be addressed to those who are responsible for the decision making, especially policy makers. These results show that the introduction of the CMHA have made the field of Dutch mental health an impossible area to work for. , Administrative burden, Legislative amendment, Public governance, Information Management
MULTIFILE
This paper presents the results of an experimental field study, in which the effects were studied of personalized travel feedback on car owners’ car habits, awareness of the environmental impact of their travel choices, and the intention to switch modes. For a period of six weeks, 349 car owners living in Amsterdam used a smart mobility app that automatically registered all their travel movements. Participants in the experiment group received information about travel distance, time, and CO2 emission. Results show that the feedback did not influence self-reported car habits, intention, and awareness, suggesting that personalized feedback may not be a one-size-fits-all solution to change travel habits.
DOCUMENT
Background: The COVID-19 pandemic taught us how to rethink care delivery. It catalyzed creative solutions to amplify the potential of personnel and facilities. This paper presents and evaluates a promptly introduced triaging solution that evolved into a tool to tackle the ever-growing waiting lists at an academic ophthalmology department, the TeleTriageTeam (TTT). A team of undergraduate optometry students, tutor optometrists, and ophthalmologists collaborate to maintain continuity of eye care. In this ongoing project, we combine innovative interprofessional task allocation, teaching, and remote care delivery. Objective: In this paper, we described a novel approach, the TTT; reported its clinical effectiveness and impact on waiting lists; and discussed its transformation to a sustainable method for delivering remote eye care. Methods: Real-world clinical data of all patients assessed by the TTT between April 16, 2020, and December 31, 2021, are covered in this paper. Business data on waiting lists and patient portal access were collected from the capacity management team and IT department of our hospital. Interim analyses were performed at different time points during the project, and this study presents a synthesis of these analyses. Results: A total of 3658 cases were assessed by the TTT. For approximately half (1789/3658, 48.91%) of the assessed cases, an alternative to a conventional face-to-face consultation was found. The waiting lists that had built up during the first months of the pandemic diminished and have been stable since the end of 2020, even during periods of imposed lockdown restrictions and reduced capacity. Patient portal access decreased with age, and patients who were invited to perform a remote, web-based eye test at home were on average younger than patients who were not invited. Conclusions: Our promptly introduced approach to remotely review cases and prioritize urgency has been successful in maintaining continuity of care and education throughout the pandemic and has evolved into a telemedicine service that is of great interest for future purposes, especially in the routine follow-up of patients with chronic diseases. TTT appears to be a potentially preferred practice in other clinics and medical specialties. The paradox is that judicious clinical decision-making based on remotely collected data is possible, only if we as caregivers are willing to change our routines and cognitions regarding face-to-face care delivery.
LINK
Abstract Purpose To determine the predictive value of quality of life for mortality at the domain and item levels. Methods This longitudinal study was carried out in a sample of 479 Dutch people aged 75 years or older living independently, using a follow-up of 7 years. Participants completed a self-report questionnaire. Quality of life was assessed with the WHOQOL-BREF, including four domains: physical health, psychological, social relationships, and environment. The municipality of Roosendaal (a town in the Netherlands) indicated the dates of death of the individuals. Results Based on mean, all quality of life domains predicted mortality adjusted for gender, age, marital status, education, and income. The hazard ratios ranged from 0.811 (psychological) to 0.933 (social relationships). The areas under the curve (AUCs) of the four domains were 0.730 (physical health), 0.723 (psychological), 0.693 (social relationships), and 0.700 (environment). In all quality of life domains, at least one item predicted mortality (adjusted). Conclusion Our study showed that all four quality of life domains belonging to the WHOQOL-BREF predict mortality in a sample of Dutch community-dwelling older people using a follow-up period of 7 years. Two AUCs were above threshold (psychological, physical health). The findings offer health care and welfare professionals evidence for conducting interventions to reduce the risk of premature death.
DOCUMENT
