International Survey of Psychosocial Care for Cancer Survivors in Low-/Middle- and High-Income Countries: Current Practices, Barriers, and Facilitators to Care.

PURPOSE: The number of cancer survivors living with and beyond cancer treatment is rising globally. It is fundamental to understand the extent and type of psychosocial care services offered worldwide. We evaluated models of cancer survivorship care, psychosocial care practices in the post-treatment survivorship phase, and barriers/facilitators to delivery of psychosocial care services, including in low- and middle-income countries (LMICs). METHODS: The International Psycho-Oncology Society (IPOS) Survivorship Special Interest Group led a cross-sectional online survey between March and November 2022. Health care professionals and researchers in psycho-oncology were invited through the IPOS global membership, social media, and snowballing. The survey was administered to individuals but included questions related to practices in their country at a national level. RESULTS: Two hundred eighty-three respondents from 37 countries participated (40% from LMICs), with a median of 12 years of experience (IQR, 6-20) in the psycho-oncology field. Participants reported that the most common elements of routine survivorship care were related to the prevention/management of recurrences/new cancers (74%), physical late effects (59%), and chronic medical conditions (53%), whereas surveillance/management of psychosocial late effects (27%) and psychosocial/supportive care (25%) were least common. Service availability was more commonly reported in high-income countries (HICs) than LMICs related to reproductive health (29% v 17%), genetic counseling/support (40% v 20%), and identifying/managing distress (39% v 26%) and pain (66% v 48%). Key barriers included providers focusing on treatment not survivorship (57%), medical not psychosocial care (60%), and a lack of allied health providers to deliver psychosocial care (59%). CONCLUSION: The psychosocial needs of people living with cancer are not adequately available and/or provided in post-treatment survivorship even in HICs, because of barriers at patient, provider, and system levels.

Improving family grief outcomes: A scoping review of family-based interventions before and after the death of a child.

BACKGROUND: Experiencing the illness and death of a child is a traumatic experience for the parents and the child's siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate age-appropriate support for siblings. AIM: We aimed to synthesize the empirical literature regarding grief interventions that target the whole family before and/or after the death of a child. DESIGN: A scoping review following the Joanna Briggs Institute and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. DATA SOURCES: We searched PubMed, PsycINFO, Embase, CINAHL, and Scopus covering January 1998-May 2022. We included studies describing any type of structured intervention targeting the whole family (i.e. parents and siblings) before or/and after the death of a child (below 18 years), with pre-post assessments of grief-related symptoms in the family as an outcome. RESULTS: After removal of duplicates, we screened the titles and abstracts of 4078 publications and identified 30 publications for full-text screening. None of the studies met the inclusion criteria. Most of the studies were excluded because they either did not target the whole family or did not target families who had lost a child below 18 years. Bereavement camps were a popular form of family intervention, but none were evaluated in a pre-post design. No grief interventions offering support pre-death were found. CONCLUSIONS: There is great need for research to improve bereavement outcomes for the entire family and to potentially integrate this in pediatric palliative care.

Cohort profile of FALCON: a prospective nationwide cohort of families with minor children who have lost a parent in Denmark in 2019-2021.

Difficulties in recruiting newly bereaved families and following them over time present a major barrier in grief research following the death of a spouse/parent. We established FALCON-the first prospective nationwide cohort of families with children below age 18 years whose parent died in Denmark between April 2019 and July 2021. Data from parents and children were collected within 2 months of death with ongoing follow-up assessments up to 18 months post-death. A total of 992 families were invited. The final cohort consisted of 250 families (250 widowed parents, 134 adolescents, 120 children aged 6-12 years and 63 children aged 0-5 years). In this paper, we describe the rationale for the cohort's creation, the challenges of researching grief in families, the methods used and future plans to utilize this unique family-level dataset.

Patient Engagement in Research Scale (PEIRS-22): Danish translation, applicability, and user experiences.

BACKGROUND: Patient and Public Involvement (PPI) in health research is gaining increased attention and acceptance worldwide. Reliable measurements are crucial to accurately assess, monitor, and evaluate patient involvement efforts in research. The Patient Engagement in Research Scale (PEIRS-22) measures meaningful patient and family caregiver engagement in research. This study focuses on three primary objectives: (1) translation of the PEIRS-22 from English to Danish, followed by linguistic validation and cultural adaptation; (2) assessing the applicability of the Danish PEIRS-22; and (3) focus group interviews to explore the user experiences of PPI. METHODS: A three-phase multi-method study was conducted. In phase one, the PEIRS-22 was translated, linguistically validated and culturally adapted to Danish. In phase two individuals from three distinct patient cancer advisory boards responded to the Danish version of PEIRS-22 to assess its applicability. Three focus group interviews were conducted in phase three, involving individuals from three patient cancer advisory boards. RESULTS: The translation process resulted in a Danish version of PEIRS-22, conceptually and culturally equivalent to the English version. Overall, among individuals of the three advisory boards (n = 15) the applicability was found to be satisfactory, with no missing data and all items completed. The total PEIRS-22 score among the three advisory boards was 85.2 out of a possible 100, with higher scores indicating greater meaningful involvement. A nested sample of the three patient cancer advisory boards (n = 9) participated in focus group interviews. The analysis yielded four themes: (1) The Danish PEIRS-22 captured the intended cultural meaning and contributed to self-reflection, (2) Internal motivation is a driver for involvement (3), Involvement brought a personal sense of empowerment and (4) Meaningful involvement collaborations are fostered by a trustful atmosphere. CONCLUSIONS: The PEIRS-22 questionnaire has been translated, linguistically validated, and culturally adapted into Danish. We propose that the PEIRS-22 is now ready for use in Danish populations. This study provides a Danish version of the questionnaire that can be used to develop patient-centred practices and foster meaningful involvement and collaborations between patients and researchers in the field of cancer research in Denmark. Personal benefits of participating in PPI can vary, and we recommend using PEIRS-22 in conjunction with a qualitative approach to better explore perspectives on meaningful involvement. TRIAL REGISTRATION: The study was registered prospectively on October 22, 2022, by the Danish Data Protection Agency (jr. nr. P-2022-528).

Patient and public involvement (PPI) in research can improve research practices by ensuring that patients' voices are heard. Individuals' lived experiences and unique viewpoints can contribute to refining research aims, ensuring they align with the needs and priorities of the target population. There is a growing interest in inviting patients into the research team as patient partners, for example, by establishing patient advisory boards. PPI can also involve caregivers and other stakeholders who are not usually thought of as members of the research team. For that reason, broadening our understanding of establishing meaningful PPI starts with measuring patient and family caregiver involvement. As such, the Patient Engagement In Research Scale (PEIRS-22) has been developed in the English language to measure meaningful patient and caregiver involvement. In this study, we aimed to (1) create a Danish version of the PEIRS-22 that respects any unique feature of Danish people, (2) assess the applicability of the Danish PEIRS-22, and (3) via focus-group interviews explore the user experiences of PPI. The patients and caregiver who were interviewed as part of the translation process expressed that the PEIRS-22 was easy to understand and captured the intended meanings. Fifteen other patient partners responded to the Danish version of PEIRS-22, and nine of them participated in the focus group interviews. One result was that creating a trusting and social atmosphere within the research group is important for promoting a personal sense of involvement.

Child-centered communication interventions in pediatric oncology: A scoping review and proposed new communication model.

Child-centered communication in pediatric oncology can be challenging. We aimed to review communication interventions with children about cancer treatment and prognosis to identify potentially effective child-centered communication models and approaches. We updated a previous review on communication interventions in oncology and searched MEDLINE, Scopus, and PsychINFO for studies indexed between October 2019 up to October 2022. We further searched for ongoing studies on ClinicalTrials.gov. Communication interventions targeting pediatric oncology patients (below 18 years), with outcomes of communication, psychological symptoms or satisfaction in the target population were eligible. We identified 685 titles/abstracts, screened the full text of 34 studies and included only one published study and two ongoing studies. The published study tested a communication tool to help clinicians inform adolescents about treatment options and facilitate shared decision-making. No communication models were identified. We drew on knowledge from existing studies and guidelines to develop a new child-centered communication model.

Are education and cohabitation associated with health-related quality of life and self-management during breast cancer follow-up? A longitudinal study.

BACKGROUND: Oncologist-led follow-up after breast cancer (BC) is increasingly replaced with less intensive follow-up based on higher self-management, which may overburden the less resourceful patients. We examined whether socioeconomic factors measured recently after the implementation of a new follow-up program for BC patients were associated with health-related quality of life (HRQoL) and self-management 12 months later. METHODOLOGY: Between January and August 2017, we invited 1773 patients in Region Zealand, Denmark, to participate in baseline and 12 months follow-up questionnaires. The patients had surgery for low- and intermediate risk BC 1-10 years prior to the survey, and they had recently been allocated to the new follow-up program of either patient-initiated follow-up, or in-person or telephone follow-up with a nurse, based on patients' preferences. We examined associations between socioeconomic factors (education and cohabitation) at baseline and two outcomes: HRQoL (EORTC QLQ-C30 and QLQ-BR23) and self-management factors (health care provider, confidence in follow-up, contact at symptoms of concern, and self-efficacy) at 12 months follow-up. Sensitivity analyses were performed according to time since diagnosis (≤ 5 > 5 years). Furthermore, we investigated whether treatment and self-management factors modified the associations. RESULTS: A total of 987 patients were included in the analyses. We found no statistically significant associations between socioeconomic factors and HRQoL, except in patients ≤ 5 years from diagnosis. For self-management patients with short education were more likely to report that they had not experience relevant symptoms of concern compared to those with medium/long education (OR 1.75 95% CI: 1.04; 2.95). We found no clear patterns indicating that treatment or self-management factors modified the associations between socioeconomics' and HRQoL. CONCLUSION: Overall socioeconomic factors did not influence HRQoL and self-management factors except for experiencing and reporting relevant symptoms of concern. Socioeconomic factors may, however, influence HRQoL in patients within five years of diagnosis.

Impact of previous depression on the risk of suicide among prostate cancer patients.

BACKGROUND: Prior studies of suicide risk among prostate cancer patients are conflicting. We compared the risk of suicide in prostate cancer patients to cancer-free men including adjustment for clinical stage, socioeconomic position, somatic comorbidity, and previous depression. MATERIALS AND METHODS: A cohort of 37,527 men diagnosed with prostate cancer in Denmark during 1998-2011 was identified in the Danish Prostate Cancer Registry (DaPCaR) and compared with 357,384 cancer-free men matched by age at the time of diagnosis. The primary outcome was death from suicide. Data were analyzed using cumulative incidence functions and multivariable Cox regression models. RESULTS: Among prostate cancer patients, 3813 had a previous depression, defined as filed antidepressant prescription within three years before diagnosis. In the study period, 108 prostate cancer patients were registered with suicide as the cause of death, hereof 26 with previous depression. There was no difference in the cumulative incidence of suicide between prostate cancer patients and cancer-free men. There was no effect modification of previous depression on the risk of suicide (p = .12). The hazard ratio (HR) for suicide varied with time since diagnosis. A sensitivity analysis showed that the risk of suicide was highest within the first year of diagnosis where prostate cancer patients had a 1.70-fold increased hazard compared with cancer-free men (95% CI, 1.11-2.59). Men with prostate cancer and previous depression had a three-fold increased hazard for suicide compared with prostate cancer patients without a history of depression (HR 2.84, 95% CI, 1.82-4.45). CONCLUSION: The absolute risk of suicide is low following a prostate cancer diagnosis. Time since diagnosis and a history of depression was associated with the highest risk of suicide. Healthcare professionals should be aware of an increased risk of suicide among men with previous depression, especially in the immediate aftermath of the diagnosis.

Psychotropic medication among children who experience parental death to cancer.

The psychological consequences of losing a parent to cancer are unclear. We investigated whether experiencing parental death to cancer before 18 years of age increases the risk of psychotropic medication. We used register data of all children born in Denmark between 1 January 1987 and 31 December 2016 (N = 1,488,846). We assessed rate ratios (RRs) with 95% confidence intervals (CIs) for first redeemed prescription of antidepressants, anxiolytics and hypnotics according to parental death status using Poisson multi-state models. We further examined whether the associations differed according to the gender of the deceased parent, child's age at the time of death or the parental length of illness. Cancer-bereaved children had a significantly increased risk of first prescription of psychotropic medication (rate ratio, RR 1.22, 95% confidence interval, CI 1.10-1.34 for males; RR 1.18, 95% CI 1.09-1.28 for females). Associations were strongest if the parent had the same sex as the child and if the parent died within one year of diagnosis. The risk was highest during the first six months after the loss (RR 2.35, 95% confidence interval, CI 1.48-3.73 for males; RR 1.81, 95% CI 1.17-2.80 for females). Children who lose a parent to cancer, particularly in cases when the disease progressed quickly, may need extra psychological support, especially during the first six months after the death.

Protocol for 'Resilient Caregivers': a randomised trial of a resilience-based intervention for psychologically distressed partner caregivers of patients with cancer.

INTRODUCTION: Intimate partners of patients with cancer often experience significant distress, but there is a lack of psychological interventions that specifically target this population. 'Resilient Caregivers' is a novel resilience-based intervention for distressed partner cancer caregivers. The intervention was developed according to a resilience framework focusing on meta-reflective skills, coping strategies and value clarification. The aim of this study is to evaluate the effectiveness of this intervention in a randomised trial. METHODS AND ANALYSIS: Eighty participants will be invited through the Oncology Department at Herlev Hospital, Denmark and randomised to either the intervention or usual care. Participants are eligible if they are partners (married or unmarried) of patients diagnosed with cancer and experience distress (>4 on the distress thermometer). 'Resilient Caregivers' consists of seven manualised group sessions (2.5 hours each), focusing on resilience in relation to being a partner caregiver of a patient with cancer. The primary outcome is symptoms of anxiety, while secondary outcomes include distress, depression, quality of life, sleep quality and resilience. Data will be collected at baseline, 3, 6 and 12 months follow-up using validated scales, and analysed using mixed models for repeated measures. ETHICS AND DISSEMINATION: This study will follow the ethical principles in the Declaration of Helsinki and has been reviewed by the Ethics Committee of the Capital Region of Denmark (Journal no. 18055373). Written informed consent will be obtained from all participants. Results will be reported through scientific peer-reviewed journals and relevant conferences. TRIAL REGISTRATION NUMBER: NCT04610034.

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.

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.

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

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" (ß = - 0.2), "navigating the system" (ß = - 0.2), and "understand health information" (ß = - 0.2), were significantly associated with lower patient depression (p < 0.05), while four dimensions, "having sufficient information" (ß = 0.3), "navigating the system" (ß = 0.2), "find health information" (ß = 0.2), and "understand health information" (ß = 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.

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

Background: 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. Material and methods: 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. Results: 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. Conclusions: 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.

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

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

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

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.