Patients with a hematologic malignancy increasingly prefer to be actively involved in treatment decision-making. Shared decision-making (SDM), a process that supports decision-making in preference-sensitive decisions, fits well with this need. A decision is preference sensitive when well-informed patients considerably differ in their trade-offs between the pros and cons of one option, or if more equal treatment options are available, including no treatment. SDM involves several steps: the first is choice talk, where the professional informs the patient that a decision needs to be made between the various relevant options and that the patient's opinion is important. The second is option talk, where the professional explains the options and their pros and cons. In the third step, preference talk, the professional and the patient discuss the patient's preferences. The professional supports the patient in deliberation. The final step is decision talk, where the professional and patient discuss the patient's decisional role preference, make or defer the decision and discuss possible follow-up.
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Patients with a hematologic malignancy increasingly prefer to be actively involved in treatment decision-making.1,2 Shared decision-making (SDM), a process that supports decision-making in preference-sensitive decisions, fits well with this need. A decision is preference sensitive when well-informed patients considerably differ in their trade-offs between the pros and cons of one option, or if more equal treatment options are available, including no treatment. SDM involves several steps: the first is choice talk, where the professional informs the patient that a decision needs to be made between the various relevant options and that the patient's opinion is important. The second is option talk, where the professional explains the options and their pros and cons. In the third step, preference talk, the professional and the patient discuss the patient's preferences. The professional supports the patient in deliberation. The final step is decision talk, where the professional and patient discuss the patient's decisional role preference, make or defer the decision and discuss possible follow-up.3,4
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Identifying factors that predict health-related quality of life (QOL) following hematopoietic SCT, is important in estimating patients’ abilities to adjust to the consequences of their disease and treatment. As the studies that have been published on this subject are scattered, the present study aimed to systematically review prognostic factors for health-related QOL after auto- and allo-SCT in hematological malignancies. A systematic, computerized search in Medline, EMBASE, PsycINFO and the Cochrane Library was conducted from 2002 to June 2010. The methodological quality of the studies was assessed using an adaptation of Hayden's criteria list. Qualitative data synthesis was performed to determine the strength of the scientific evidence. In all, 35 studies fulfilled the selection criteria. Strong–moderate evidence was found for GVHD, conditioning regimen, being female, younger age, receiving less social support and pre-transplant psychological distress as predictors of various aspects of health-related QOL following hematopoietic SCT. The results of this review may help transplant teams in selecting patients at risk for experiencing a diminished health-related QOL following hematopoietic SCT. Follow-up treatment can be provided in order to promote QOL.
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Abstract: Since the first Oxford Survey of Childhood Cancer’s results were published, people have become more aware of the risks associated with prenatal exposure from diagnostic x rays. As a result, it has since been the subject of many studies. In this review, the results of recent epidemiological studies are summarized. The current international guidelines for diagnostic x-ray examinations were compared to the review. All epidemiological studies starting from 2007 and all relevant international guidelines were included. Apart from one study that involved rhabdomyosarcoma, no statistically significant associations were found between prenatal exposure to x rays and the development of cancer during 2007–2020. Most of the studies were constrained in their design due to too small a cohort or number of cases, minimal x-ray exposure, and/or data obtained from the exposed mothers instead of medical reports. In one of the studies, computed tomography exposure was also included, and this requires more and longer follow-up in successive studies. Most international guidelines are comparable, provide risk coefficients that are quite conservative, and discourage abdominal examinations of pregnant women.
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Hematological malignancies and treatment with hematopoietic SCT are known to affect patients’ quality of life. The problem profile and care needs of this patient group need clarification, however. This study aimed to assess distress, problems and care needs after allo- or auto-SCT, and to identify risk factors for distress, problems or care needs. In this cross-sectional study, patients treated with allo-SCT or auto-SCT for hematological malignancies completed the Distress Thermometer and Problem List. Three patient groups were created: 0–1, 1–2.5 and 2.5–5.5 years after transplantation. After allo-SCT, distress and the number of problems tended to be lower with longer follow-up. After auto-SCT, distress was highest at 1–2.5 year(s). Patients mainly reported physical problems, followed by cognitive-emotional and practical problems. A minority reported care needs. Risk factors for distress as well as problems after allo-SCT included younger age, shorter time after transplantation and GVHD. A risk factor for distress as well as problems after auto-SCT was the presence of comorbid diseases. Up to 5 years after auto-SCT or allo-SCT, patients continue to experience distress and problems. Judged by prevalence, physical problems are first priority in supportive care, followed by cognitive-emotional and practical problems.
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Screening for psychological distress in patients with cancer is currently being debated in the British Journal of Cancer. Screening has been recommended, as elevated levels of distress have been consistently observed and clinicians tend to overlook the need of psychological support (Carlson et al, 2012; Carlson et al, 2013; National Comprehensive Cancer Network, 2013). On the other hand, it has been argued that screening should not be implemented, as the true benefit of screening and subsequent treatment of psychological distress is far from being definitively proven (Coyne, 2013). Recent findings on human resilience in the face of potentially traumatic events (PTEs) provide a new perspective on detecting and treating psychological distress in patients with cancer. Humans show strong resilience in the face of potentially traumatic events, such as cancer diagnosis and treatment (Bonanno et al, 2011). This observation leads us to propose two alternative approaches towards detecting and treating psychological distress in patients with cancer: ‘screening for psychological distress’ and ‘supporting resilience and case finding’.
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Patiënten met kanker in het bloed, beenmerg of lymfeklieren (hematologische maligniteiten) die behandeld worden met stamceltransplantatie staan voor de uitdaging om te gaan met een levensbedreigende ziekte en een stressvolle behandeling. Een deel van de patiënten ervaart psychische klachten zoals angst of depressie. In dit proefschrift hebben we de effecten van en behoefte aan ondersteunende psychische zorg bestudeerd bij deze patiëntengroep, door middel van een gerandomiseerde klinische studie, vragenlijstonderzoeken en interviews. Tot 68% van de patiënten bleek cognitieve/emotionele problemen te ervaren in de vijf jaar na stamceltransplantatie. Slechts een minderheid (6.5%) had echter behoefte aan aanvullende, ondersteunende zorg voor deze problemen. Ook binnen de gerandomiseerde klinische studie had de meerderheid van de patiënten geen behoefte aan actieve interventies gericht op vermindering van angst- of depressieve symptomen. Deels wordt dit verklaard doordat ongeveer 10% van de patiënten al ondersteuning kreeg binnen de huidige zorg. Verder bleek de behoefte aan ondersteunende zorg afhankelijk te zijn van o.a. de wens van patiënten om hun problemen zelfstandig of met behulp van hun naasten aan te pakken, hun copingstrategieën, en hun kennis van beschikbare hulp. De meerderheid van patiënten die behandeld zijn met stamceltransplantatie, blijkt in staat om met ondersteuning van naasten, artsen en verpleegkundigen goed met (de gevolgen van) hun ziekte en behandeling om te gaan. In de aanvullende ondersteunende zorg moet er een goede balans worden gezocht tussen enerzijds het ondersteunen van de veerkracht van patiënten en hun wens om problemen zelfstandig aan te pakken, en anderzijds hun eventuele behoefte aan professionele zorg.
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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 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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