Background: Survivors of lymphoma experience multiple challenges after treatment. However, a lack of knowledge of in-depth experiences of lymphoma survivors in early aftercare persists. Objective: To gain an in-depth understanding of the experiences of lymphoma survivors in early aftercare who have received an aftercare consultation based on evidence-based guideline recommendations, with an advanced practice nurse. Methods: This study used a narrative design. We recruited lymphoma survivors after a best-practice aftercare consultationwith an advanced practice nurse. A total of 22 lymphoma survivors and 9 partners participated. Data were collected through narrative interviews and analyzed according to thematic narrative analysis. Results: Six themes emerged: living and dealing with health consequences, coping with work and financial challenges, having a positive outlook and dealing with uncertainty, deriving strength from and experiencing tensions in relationships, getting through tough times in life, and receiving support from healthcare professionals. Conclusions: The stories of lymphoma survivors in early aftercare revealed their experiences of how they coped with a range of challenges in their personal lives. Choosing an aftercare trajectory based on an aftercare consultation that encourages patients to think about their issues, goals, and possible aftercare options may be useful for their transition from treatment to survivorship. Implications for practice: Survivors’ social support and self-management capabilities are important aspects to be addressed in cancer care. An aftercare consultation involving shared goal setting and care planning may help nurses provide personalized aftercare.
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Background: Survivors of lymphoma experience multiple challenges after treatment. However, a lack of knowledge of in-depth experiences of lymphoma survivors in early aftercare persists. Objective: To gain an in-depth understanding of the experiences of lymphoma survivors in early aftercare who have received an aftercare consultation based on evidence-based guideline recommendations, with an advanced practice nurse. Methods: This study used a narrative design. We recruited lymphoma survivors after a best-practice aftercare consultation with an advanced practice nurse. A total of 22 lymphoma survivors and 9 partners participated. Data were collected through narrative interviews and analyzed according to thematic narrative analysis. Results: Six themes emerged: living and dealing with health consequences, coping with work and financial challenges, having a positive outlook and dealing with uncertainty, deriving strength from and experiencing tensions in relationships, getting through tough times in life, and receiving support from healthcare professionals. Conclusions: The stories of lymphoma survivors in early aftercare revealed their experiences of how they coped with a range of challenges in their personal lives. Choosing an aftercare trajectory based on an aftercare consultation that encourages patients to think about their issues, goals, and possible aftercare options may be useful for their transition from treatment to survivorship. Implications for practice: Survivors’ social support and self-management capabilities are important aspects to be addressed in cancer care. An aftercare consultation involving shared goal setting and care planning may help nurses provide personalized aftercare.
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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.
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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.
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Purpose: This study aimed to develop and pretest a systematic conversation approach for nurses to tailor aftercare to oncology patient's goals, unmet needs and wishes. Methods: We used an iterative developmental process for complex interventions: 1. Identifying problems 2. Identifying overall objectives 3. Designing the intervention 4. Pretesting and adapting the intervention. Results: The main results of the problem identification were: non-systematic and incomplete screening of potential issues, caveats in providing information, and shared decision-making. The overall objective formulated was: To develop a model for aftercare conversations based on shared goal-setting and decision-making. The conversation approach consists of four phases: 1. Preparation of the consultation including a questionnaire, 2. Shared goal-setting by means of a tool visualizing domains of life, and 3. Shared care planning by means of an overview of possible choices in aftercare, a database with health care professionals and a cancer survivorship care plan. 4. Evaluation. The results of the pretest revealed that the conversation approach needs to be flexible and tailored to the patient and practice setting, and embedded in the care processes. The conversation approach was perceived as enhancing patient-centeredness and leading to more in-depth consultations. Conclusion: The conversation approach was developed in co-creation with stakeholders. The results of the pretest revealed important implications and suggestions for implementation in routine care. The aftercare conversation approach can be used by nurses to provide tailored patient-centered evidence-based aftercare. Tailored aftercare should support oncology patient's goals, unmet needs and wishes. Further tailoring is needed.
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Objective: Effective healthcare innovations are often not adopted and implemented. An implementation strategy based on facilitators and barriers for use as perceived by healthcare professionals could increase adoption rates. This study therefore aimed to identify the most relevant facilitators and barriers for use of an innovative breast cancer aftercare decision aid (PtDA) in healthcare practice. Methods: Facilitators and barriers (related to the PtDA, adopter and healthcare organisation) were assessed among breast cancer aftercare health professionals (n = 81), using the MIDI questionnaire. For each category, a backward regression analysis was performed (dependent = intention to adopt). All significant factors were then added to a final regression analysis to identify to most relevant determinants of PtDA adoption. Results: Expecting higher compatibility with daily practice and clinical guidelines, more positive outcomes of use, higher perceived relevance for the patient and increased self-efficacy were significantly associated with a higher intention to adopt. Self-efficacy and perceived patient relevance remained significant in the final model. Conclusions: Low perceived self-efficacy and patient relevance are the most important barriers for health professions to adopt a breast cancer aftercare PtDA. Practice implications: To target self-efficacy and perceived patient relevance, the implementation strategy could apply health professional peer champions.
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Purpose: Aftercare for curatively treated breast cancer patients includes support and information provision. As patients differ in their needs, personalization of aftercare is advocated, but clear guidelines on how to achieve personalization are currently missing. This study investigates patients’ preferences regarding assessment of care needs and information provision. Method: Semi-structured interviews were conducted with 18 breast cancer patients (15 female, 3 male) who received aftercare for at least three months in five Dutch hospitals. Interviews were analyzed using thematic analysis. Results: Several patients perceived current aftercare as too intensive or too little, therefore they preferred to discuss their needs beforehand with their health care provider to align aftercare with their needs. Patients preferred more attention to needs on the domains of social and emotional wellbeing and return to work. Patients preferred a comprehensive resource of information on potential (late) effects of cancer and its treatment and of available support options, enabling them to self-manage the dosage and timing of desired information. Patients had positive expectations about an aftercare plan, as it would provide a better overview of their care needs, support options and agreements about the aftercare trajectory. Conclusions: To facilitate personalization in aftercare, information and care needs should be better addressed and summarized in an aftercare plan. Patients and healthcare practitioners should create the aftercare plan together in shared decision-making. A supporting tool is needed to improve assessment of care needs on multiple domains, to provide layered information and facilitate use of aftercare plans.
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Introduction: Cancer survivors face physical, lifestyle, psychological, and psychosocial challenges. Despite the availability of aftercare services, survivors still have unmet needs. Digital aftercare programs may offer support, but their use is limited. This study aimed to examine what is needed to improve uptake and adoption of these programs. Additionally, it explored sociodemographic and clinical variables that may influence these needs. Methods: A mixed-methods approach was used, involving qualitative interviews and a questionnaire. The research was guided by the COM-B model of behaviour, which considers capability, opportunity, and motivation crucial for behaviour. Qualitative analysis was performed using the framework method. Statistical analyses involved descriptive statistics and regression analysis. Results: Fourteen cancer survivors were interviewed, and 213 participants completed the questionnaire. Findings indicated that most respondents had a positive or neutral attitude towards digital aftercare programs, believing these could address their cancer-related challenges. Still, only a small percentage had experience with them, and most were unaware of their existence. Many expressed a desire to be informed about them. Some were uncertain about their effectiveness. Others were concerned about a lack of reimbursement. No significant influence of the sociodemographic and clinical variables was found. Conclusion: Cancer survivors are generally positive about digital aftercare programs but are often unaware of their availability. Raising awareness, clarifying their value, and providing support and reimbursement could enhance uptake and adoption. Implications for Cancer Survivors: The current insights can help improve participation in digital aftercare programs, ultimately fostering health, well-being, and quality of life of cancer survivors.
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The aim of the research reported in this thesis was to gain knowledge about the implementation of evidence‐based practice (EBP) in nursing to find a way to integrate shared decision making (SDM) with EBP in a chronic care environment in nursing, and to develop a strategy for an integrated approach of EBP and SDM in daily nursing practice in the individual aftercare for cancer survivors.
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A growing interest in person-centered care from a biopsychosocial perspective has led to increased attention to structural screening. The aim of this study was to develop an easy-to-comprehend screening instrument using single items to identify a broad range of health-related problems in adult burn survivors. This study builds on earlier work regarding content generation. Focus groups and expert meetings with healthcare providers informed content refinement, resulting in the Aftercare Problem List (APL). The instrument consists of 43 items divided into nine health domains: scars, daily life functioning, scars treatment, body perceptions, stigmatization, intimacy, mental health, relationships, financial concerns, and a positive coping domain. The APL also includes a Distress Thermometer and a question inquiring about preference to discuss the results with a healthcare provider. Subsequently, the APL was completed by 102 outpatients. To test face validity, a linear regression analysis showed that problems in three health domains, i.e., scars, mental health, and body perceptions, were significantly related to higher distress. Qualitative results revealed that a minority found the items difficult which led to further adjustment of the wording and the addition of illustrations. In summation, this study subscribes to the validity of using single items to screen for burn-related problems.
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