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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