Publications by authors named "Beverley Lim Høeg"

5 Publications

  • Page 1 of 1

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.
View Article and Find Full Text PDF

Download full-text PDF

Source
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.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1007/s11764-020-00964-xDOI Listing
November 2020

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.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1080/0284186X.2019.1566776DOI Listing
May 2019

Early parental loss and intimate relationships in adulthood: A nationwide study.

Dev Psychol 2018 May 25;54(5):963-974. Epub 2018 Jan 25.

Survivorship Unit, Danish Cancer Society Research Center.

Being able to form and maintain intimate relationships is an essential part of development and the early loss of a parent may negatively affect this ability. This study investigates the association between parental loss before the age of 18 years and the formation and dissolution of marriage and cohabitation relationships in adulthood, in relation to factors that may help identify potentially vulnerable subgroups of bereaved children, that is, sex of the deceased parent, cause of death and child's age at the time of death. Using data from national registries, we followed all children born in Denmark between 1970 and 1995 (n = 1,525,173) and used Poisson regression models to assess rate ratios by gender for relationship formation and separation according to early parental loss. We stratified the analyses by sex of the deceased parent, cause of death and child's age at the time of death, and adjusted for the confounding effects of parental income, education level, and psychiatric illness. We found that parental loss was associated with a higher rate of relationship formation for young women, but not young men, and higher rates of separation for both men and women. The associations with separation were stronger for persons who lost a parent to suicide than to other causes. The effects were relatively small, a possible testimony to the resilience of developmental processes in most children. However, as long-term relationships are associated with physical and psychological health, interventions for bereaved children and families are important, especially in the subgroup bereaved by suicide. (PsycINFO Database Record
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1037/dev0000483DOI Listing
May 2018

Maladaptive coping in adults who have experienced early parental loss and grief counseling.

J Health Psychol 2017 12 31;22(14):1851-1861. Epub 2016 Mar 31.

1 Danish Cancer Society Research Center, Denmark.

This study compares maladaptive coping, measured as substance use, behavioral disengagement, self-blame, and emotional eating, among adults (>18 years) who have experienced early parental loss ( N = 1465 women, N = 331 men) with non-bereaved controls ( N = 515 women, N = 115 men). We also compared bereaved adults who received grief counseling ( N = 822 women, N = 190 men) with bereaved controls who had not ( N = 233 women, N = 66 men). Bereaved adults reported significantly more substance use, behavioral disengagement, and emotional eating than non-bereaved adults. Counseling participants reported significantly more substance use and self-blame than non-participants. Our results suggest that early loss may negatively impact the development of adulthood coping.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1359105316638550DOI Listing
December 2017