Publications by authors named "Lena Saltbæk"

9 Publications

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The development and initial validation of the Breast Cancer Recurrence instrument (BreastCaRe)-a patient-reported outcome measure for detecting symptoms of recurrence after breast cancer.

Qual Life Res 2021 Apr 16. Epub 2021 Apr 16.

Psychological Aspects of Cancer, Danish Cancer Society Research Center, Strandboulevarden 49, 2100, Copenhagen, Denmark.

Purpose: Patient-reported outomes (PRO) may facilitate prompt treatment. We describe the development and psychometric properties of the first instrument to monitor for symptoms of breast cancer (BC) recurrence.

Methods: This study is nested in the MyHealth randomized trial of nurse-led follow-up based on electronically-collected PROs. We constructed items assessing symptoms of potential recurrence through expert interviews with six BC specialists in Denmark. Semi-structured cognitive interviews were carried out with a patient panel to assess acceptability and comprehensibility. Items were subsequently tested in a population of 1170 women 1-10 years after completing BC treatment. We carried out multiple-groups confirmatory factor analysis (CFA) and Rasch analysis to test dimensionality, local dependence (LD) and differential item functioning (DIF) according to sociodemographic and treatment-related factors. Clinical data was obtained from the Danish Breast Cancer Group registry.

Results: Twenty-two items were generated for the Breast Cancer Recurrence instrument (BreastCaRe). Cognitive testing resulted in clearer items. Seven subscales based on general, bone, liver, lung, brain, locoregional and contralateral recurrence symptoms were proposed. Both CFA and Rasch models confirmed the factor structure. No DIF was identified. Five item pairs showed LD but all items were retained to avoid loss of clinical information. Rasch models taking LD into account were used to generate a standardized scoring table for each subscale.

Conclusions: The BreastCaRe has good content and structural validity, patient acceptability and measurement invariance. We are preparing to examine the predictive validity of this new instrument.
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http://dx.doi.org/10.1007/s11136-021-02841-1DOI Listing
April 2021

Is the health literacy of informal caregivers associated with the psychological outcomes of breast cancer survivors?

J Cancer Surviv 2020 Nov 9. Epub 2020 Nov 9.

Psychological Aspects of Cancer, Danish Cancer Society Research Center, Strandboulevarden 49, 2100, Copenhagen, Denmark.

Purpose: To investigate whether health literacy (HL) among informal caregivers of breast cancer (BC) survivors is associated with patient psychological outcomes.

Methods: We used data (n = 340 pairs) from baseline questionnaires administered in the MyHealth trial investigating nurse-led BC follow-up. All BC survivors and their invited caregivers were included immediately after completion of primary treatment. We performed multivariate regression analyses to examine the association between caregiver HL (nine dimensions as measured by the Health Literacy Questionnaire) as exposure and patient depression, anxiety, and health-related quality of life (HQoL) as outcomes. We further examined whether any association differed according to type of caregiver, patient HL, and patient activation (skill in managing one's health).

Results: Three dimensions, "ability to engage with providers" (β = - 0.2), "navigating the system" (β = - 0.2), and "understand health information" (β = - 0.2), were significantly associated with lower patient depression (p < 0.05), while four dimensions, "having sufficient information" (β = 0.3), "navigating the system" (β = 0.2), "find health information" (β = 0.2), and "understand health information" (β = 0.2), were significantly associated with better patient HQoL (p < 0.05). No significant associations were found for anxiety. Patient HL and activation did not significantly modify the associations, while certain associations for depression were stronger in patients with non-partner caregivers.

Conclusions: The HL of informal caregivers may play an important role in optimizing psychological outcomes in cancer survivors.

Implications For Cancer Survivors: Involving informal caregivers, who can provide support related to health information and services, may be beneficial for the psychological well-being of cancer survivors.
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http://dx.doi.org/10.1007/s11764-020-00964-xDOI Listing
November 2020

Patterns in detection of recurrence among patients treated for breast cancer.

Breast Cancer Res Treat 2020 Nov 6;184(2):365-373. Epub 2020 Aug 6.

Survivorship and Inequality in Cancer, Danish Cancer Society Research Center, Strandboulevarden 49, 2100, Copenhagen, Denmark.

Purpose: The Danish follow-up program for breast cancer (BC) patients has recently been changed. Today most patients are offered open access to an outpatient clinic, whereas the scheduled visits are phased out. This strategy has been studied in regards to psychological and health-related quality of life outcomes, but not in regards to detection of recurrence and survival. The aim of this study was to quantify the recurrences detected at scheduled outpatient visits in Denmark before the implementation of revised follow-up guidelines.

Methods: We conducted a cross-sectional study among 310 patients with recurrent BC. Information was retrieved on tumor characteristics, type of visit when recurrence was detected, recurrence localization, symptoms reported, and duration of symptoms from the Danish Breast Cancer Group database and medical records.

Results: The recurrences were locoregional (26%), locoregional and distant (15%), or distant (59%). Among patients still in outpatient follow-up (n = 199), recurrence was detected at a patient-requested extra outpatient visit (15%), by the general practitioner or other specialist (47%), at a scheduled outpatient visit (21%), or on a scheduled mammogram (11%). Among patients with recurrences detected at scheduled outpatient visits, the majority (88%) reported symptoms related to the recurrence. Most frequent symptoms were pain (37%), dyspnoea (15%), and fatigue (12%).

Conclusions: One-fifth of BC recurrences among patients attending outpatient follow-up were detected at scheduled outpatient visits. Very few of these were asymptomatic. Whether there will be a delay in detection of the symptomatic recurrences when the number of visits is reduced is unknown.
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http://dx.doi.org/10.1007/s10549-020-05847-4DOI Listing
November 2020

Cancer patients, physicians, and nurses differ in their attitudes toward the decisional role in do-not-resuscitate decision-making.

Support Care Cancer 2020 Dec 15;28(12):6057-6066. Epub 2020 Apr 15.

Department of Oncology, Herlev and Gentofte University Hospital, Borgmester Ib Juuls Vej 7, DK-2730, Herlev, Denmark.

Purpose: Do-not-resuscitate (DNR) decision-making in severely ill patients presents many difficult medical, ethical, and legal challenges. The primary aim of this study was to explore cancer patients' and health care professionals' attitudes regarding DNR decision-making authority and timing of the decision.

Methods: This study was a questionnaire survey among Danish cancer patients and their attending physicians and nurses in an oncology outpatient setting. Potential differences between patients', physicians', and nurses' answers to the questionnaire were analyzed using Fisher's exact test.

Results: Responses from 904 patients, 59 physicians, and 160 nurses were analyzed. The majority in all three groups agreed that DNR decisions should be made in collaboration between physician and patient. However, one-third of the patients answered that the patient alone should make the decision regarding DNR, which contrasts with the physicians' and nurses' attitudes, 0% and 6% pointing to the patient as sole decision-maker, respectively. In case of disagreement between patient and physician, a majority of both patients (66%) and physicians (86%) suggested themselves as the ultimate decision-maker. Additionally, 43% of patients but only 19% of physicians preferred the DNR discussion being brought up early in the course of the disease.

Conclusions: With regard to the decisional role of patient vs. physician and the timing of the DNR discussion, we found a substantial discrepancy between the attitudes of cancer patients and physicians. This discrepancy calls for a greater awareness and discussion of this sensitive topic among both health care professionals and the public.
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http://dx.doi.org/10.1007/s00520-020-05460-7DOI Listing
December 2020

Follow-up strategies following completion of primary cancer treatment in adult cancer survivors.

Cochrane Database Syst Rev 2019 11 21;2019(11). Epub 2019 Nov 21.

Danish Cancer Society Research Center, Survivorship Unit, Strandboulevarden 49, Copenhagen, Central Denmark Region, Denmark, 2100.

Background: Most cancer survivors receive follow-up care after completion of treatment with the primary aim of detecting recurrence. Traditional follow-up consisting of fixed visits to a cancer specialist for examinations and tests are expensive and may be burdensome for the patient. Follow-up strategies involving non-specialist care providers, different intensity of procedures, or addition of survivorship care packages have been developed and tested, however their effectiveness remains unclear.

Objectives: The objective of this review is to compare the effect of different follow-up strategies in adult cancer survivors, following completion of primary cancer treatment, on the primary outcomes of overall survival and time to detection of recurrence. Secondary outcomes are health-related quality of life, anxiety (including fear of recurrence), depression and cost.

Search Methods: We searched CENTRAL, MEDLINE, Embase, four other databases and two trials registries on 11 December 2018 together with reference checking, citation searching and contact with study authors to identify additional studies.

Selection Criteria: We included all randomised trials comparing different follow-up strategies for adult cancer survivors following completion of curatively-intended primary cancer treatment, which included at least one of the outcomes listed above. We compared the effectiveness of: 1) non-specialist-led follow-up (i.e. general practitioner (GP)-led, nurse-led, patient-initiated or shared care) versus specialist-led follow-up; 2) less intensive versus more intensive follow-up (based on clinical visits, examinations and diagnostic procedures) and 3) follow-up integrating additional care components relevant for detection of recurrence (e.g. patient symptom education or monitoring, or survivorship care plans) versus usual care.

Data Collection And Analysis: We used the standard methodological guidelines by Cochrane and Cochrane Effective Practice and Organisation of Care (EPOC). We assessed the certainty of the evidence using the GRADE approach. For each comparison, we present synthesised findings for overall survival and time to detection of recurrence as hazard ratios (HR) and for health-related quality of life, anxiety and depression as mean differences (MD), with 95% confidence intervals (CI). When meta-analysis was not possible, we reported the results from individual studies. For survival and recurrence, we used meta-regression analysis where possible to investigate whether the effects varied with regards to cancer site, publication year and study quality.

Main Results: We included 53 trials involving 20,832 participants across 12 cancer sites and 15 countries, mainly in Europe, North America and Australia. All the studies were carried out in either a hospital or general practice setting. Seventeen studies compared non-specialist-led follow-up with specialist-led follow-up, 24 studies compared intensity of follow-up and 12 studies compared patient symptom education or monitoring, or survivorship care plans with usual care. Risk of bias was generally low or unclear in most of the studies, with a higher risk of bias in the smaller trials. Non-specialist-led follow-up compared with specialist-led follow-up It is uncertain how this strategy affects overall survival (HR 1.21, 95% CI 0.68 to 2.15; 2 studies; 603 participants), time to detection of recurrence (4 studies, 1691 participants) or cost (8 studies, 1756 participants) because the certainty of the evidence is very low. Non-specialist- versus specialist-led follow up may make little or no difference to health-related quality of life at 12 months (MD 1.06, 95% CI -1.83 to 3.95; 4 studies; 605 participants; low-certainty evidence); and probably makes little or no difference to anxiety at 12 months (MD -0.03, 95% CI -0.73 to 0.67; 5 studies; 1266 participants; moderate-certainty evidence). We are more certain that it has little or no effect on depression at 12 months (MD 0.03, 95% CI -0.35 to 0.42; 5 studies; 1266 participants; high-certainty evidence). Less intensive follow-up compared with more intensive follow-up Less intensive versus more intensive follow-up may make little or no difference to overall survival (HR 1.05, 95% CI 0.96 to 1.14; 13 studies; 10,726 participants; low-certainty evidence) and probably increases time to detection of recurrence (HR 0.85, 95% CI 0.79 to 0.92; 12 studies; 11,276 participants; moderate-certainty evidence). Meta-regression analysis showed little or no difference in the intervention effects by cancer site, publication year or study quality. It is uncertain whether this strategy has an effect on health-related quality of life (3 studies, 2742 participants), anxiety (1 study, 180 participants) or cost (6 studies, 1412 participants) because the certainty of evidence is very low. None of the studies reported on depression. Follow-up strategies integrating additional patient symptom education or monitoring, or survivorship care plans compared with usual care: None of the studies reported on overall survival or time to detection of recurrence. It is uncertain whether this strategy makes a difference to health-related quality of life (12 studies, 2846 participants), anxiety (1 study, 470 participants), depression (8 studies, 2351 participants) or cost (1 studies, 408 participants), as the certainty of evidence is very low.

Authors' Conclusions: Evidence regarding the effectiveness of the different follow-up strategies varies substantially. Less intensive follow-up may make little or no difference to overall survival but probably delays detection of recurrence. However, as we did not analyse the two outcomes together, we cannot make direct conclusions about the effect of interventions on survival after detection of recurrence. The effects of non-specialist-led follow-up on survival and detection of recurrence, and how intensity of follow-up affects health-related quality of life, anxiety and depression, are uncertain. There was little evidence for the effects of follow-up integrating additional patient symptom education/monitoring and survivorship care plans.
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http://dx.doi.org/10.1002/14651858.CD012425.pub2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6870787PMC
November 2019

Whose perspective is it anyway? Dilemmas of patient involvement in the development of a randomized clinical trial - a qualitative study.

Acta Oncol 2019 May 6;58(5):634-641. Epub 2019 Feb 6.

a Survivorship Unit , Danish Cancer Society Research Center , Copenhagen , Denmark.

Patient and public involvement (PPI) is increasingly becoming a requirement in the effort to improve the relevance and quality of healthcare research. We examined how involving patients with lower education levels affected PPI in the development of the MyHealth randomized clinical trial of breast cancer follow-up from the perspectives of the patients and professionals. Eight women who had completed breast cancer treatment, four with fewer than 10 years of education, were recruited as members of a patient panel advising researchers in the development of the trial. We carried out individual and focus group interviews with panel members and recruiting nurses between April and September 2016. Researcher observations and changes made based on panel feedback were also documented. Patients were asked to evaluate the process according to a PPI theoretical framework with four dimensions: (i) ways of involvement, (ii) research vs. patient concerns, (iii) strength of the patient's voice, and (iv) degree of change. A combination of inductive and deductive thematic analysis was conducted whereby emerging themes were organized using the above framework. All patient contributors reported high satisfaction with being involved and PPI improved trial materials and recruitment strategy. However, contradictory perspectives between lay and expert approaches to research led to dilemmas not related to educational background. Patients were often more concerned with unmet needs after cancer than with research, and the scientific hierarchy made it difficult for researchers to include the patient perspective if it challenged research requirements. Nurses also faced ethical dilemmas when recruiting patients as PPI contributors. Our findings challenged the assumption that PPI automatically leads to a broad range of patient perspectives that can directly improve research relevance and quality. This highlights the need for more research and better guidance on the use of PPI in research.
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http://dx.doi.org/10.1080/0284186X.2019.1566776DOI Listing
May 2019

MyHealth: specialist nurse-led follow-up in breast cancer. A randomized controlled trial - development and feasibility.

Acta Oncol 2019 May 30;58(5):619-626. Epub 2019 Jan 30.

a Survivorship Unit , Danish Cancer Society Research Center , Copenhagen , Denmark.

Traditionally, women treated for breast cancer (BC) have been followed up through regular oncologist-led visits in outpatient clinics, focusing on detection of recurrences, new primary BC, symptom management, and psychological support. However, this follow-up routine is expensive and its effectiveness has been questioned. Consequently, alternative follow-up programs have been tested. The Guided Self-Determination method (GSD), which facilitates partnership between health-care provider and patient, has been shown to improve self-management in patients with chronic conditions, including cancer. Patient-reported outcomes (PRO) is another increasingly used tool to improve patient-provider communication, symptom monitoring and control. In combination, GSD and PRO may have the potential to meet the objectives of BC follow-up. To test this, we developed the MyHealth study, a randomized controlled trial comparing a nurse-led follow-up program based on GSD, collection of PRO, and patient navigation with routine oncologist-led follow-up. Here we describe how we developed the intervention and are currently testing the feasibility of the MyHealth protocol in terms of recruitment, adherence to the intervention, collection of PRO, and patient navigation. We have invited the first 25 consecutively enrolled patients to test the MyHealth intervention. This consists of (1) 3-5 initial GSD appointments with a nurse, (2) collection of PRO, and (3) symptom management and patient navigation. The randomized trial was launched in January 2017 and is still recruiting. Of 32 patients invited, 25 accepted participation. At 18-month follow-up, two patients have withdrawn, 143 PRO questionnaires have been completed (mean 5.7/patient) resulting in 59 nurse contacts (mean 2.4 per patient) and 14 project physician contacts (mean 0.6 per patient). A high recruitment rate and response rate to PRO indicate that follow-up led by specialist nurses, based on collection of PRO is feasible and acceptable for patients treated for early stage BC.
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http://dx.doi.org/10.1080/0284186X.2018.1563717DOI Listing
May 2019

Old age and poor prognosis increase the likelihood of disagreement between cancer patients and their oncologists on the indication for resuscitation attempt.

Support Care Cancer 2013 Dec 8;21(12):3363-70. Epub 2013 Aug 8.

Department of Oncology, Herlev Hospital, University of Copenhagen, Herlev Ringvej 75, DK-2730, Herlev, Denmark,

Background: The do-not-resuscitate decision is a common ethical problem. However, the concordance between patients' preferences and physicians' assessments of the indication for cardiopulmonary resuscitation attempt (CPR) has only been modestly investigated.

Purpose: The purpose of this study was to determine the impact of different patient characteristics on the following outcomes: (1) patients' wishes for or against CPR, (2) assessments made by physicians of the indication for CPR, and (3) the probability of discordance between patients' wishes and physicians' assessments.

Methods: In this survey, 1,128 of 1,408 cancer patients received a questionnaire concerning their wish for CPR. In total, 904 patients responded. A total of 61 treating physicians assessed the medical indication for resuscitation. Different predefined patient characteristics were analyzed using both univariate and multivariate analyses.

Results: Ninety percent of responding patients wished to receive CPR. The physicians found indications supporting CPR in 89 % of patients. Age ≥70 years, increasing line of treatment, poor prognosis, living alone, and poor self-rated physical and mental health enhanced both patients' wishes and physicians' assessments to withhold CPR. However, only age ≥70 years, poor prognosis, and poor self-rated physical health significantly predicted rejection of CPR in multivariate analyses. The likelihood of discordance between patients and physicians was significantly higher when the patient was ≥70 years and when the expected 5-year survival was <25 %.

Conclusions: Factors associated with the imminence of dying influenced both patients and physicians to refrain from CPR, and perhaps more surprisingly, the probability of discordance between patients and physicians increased.
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http://dx.doi.org/10.1007/s00520-013-1916-2DOI Listing
December 2013

Decision to resuscitate or not in patients with chronic diseases.

Dan Med J 2012 Jan;59(1):A4353

Department of Nephrology, Herlev Hospital, Denmark.

Introduction: Do-not-resuscitate (DNR) decisions are frequently made without informing the patients. We attempt to determine whether patients and physicians wish to discuss the DNR decision, who they think, should be the final decision maker and whether they agree on the indication for cardiopulmonary resuscitation (CPR) in case of cardiac arrest.

Material And Methods: We carried out a questionnaire survey among 112 haemodialysis patients and 17 physicians at department of nephrology, Herlev Hospital. The patients were interviewed orally, the physicians responded to written questionnaires.

Results: The majority of patients (86%) and physicians (88%) answered, that patients ought to be involved in the DNR decision. However they both wanted to be the final decision maker. Most patients (69%) desired CPR in case of cardiac arrest. Physicians would attempt to resuscitate 88% of the patients. In 30% of the cases, the patient and the physician disagreed on whether or not to attempt resuscitation.

Conclusion: Both patients and physicians think they ought to make the final DNR decision. In practice, patients are often not involved. Since the patient and the physician disagree regarding the indication for CPR in one third of the cases, we must assume that many patients are resuscitated against their wishes. National guidelines are required.

Funding: not relevant.

Trial Registration: not relevant.
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January 2012