Psychological Aspects of Cancer - projects

FAMOS

Psychological support for families of children with cancer – after ending treatment

Each year, approximately 200 children and youth in Denmark are diagnosed with cancer.

Parents, children with cancer and their siblings may face a number of psychological symptoms such as depression, anxiety and post-traumatic stress, even after a successful treatment. The time after having ended treatment may be vulnerable, as the families no longer have access to support in a hospital and the medical treatment is no longer the focus. In Denmark, there is no systematic psychological support for families of children with cancer after having ended treatment.

We have developed FAMOS: a home-based manualized programme for the whole family that focuses on supporting the families after treatment. The programme consists of psychotherapeutic sessions for parents and children that includes videos and cognitive behavioral techniques. The techniques were designed to be age-appropriate and meet each family member’s individual needs. Our aim is to help families adjust to life after cancer as the experience may affect their everyday life psychologically, socially and economically.

The FAMOS intervention was evaluated in a national randomized controlled trial at all four pediatric oncology departments in Denmark. Between 2013-2018 a total of 109 families participated and we investigated if there was an effect of the FAMOS intervention compared to care as usual on psychological symptoms in the parents. We found that parents receiving the FAMOS intervention had significantly lower symptoms of depression and long-term post-traumatic stress (published here). Also, we found that children in families who received the FAMOS intervention had significantly lower trauma-related behavior and that the effect could work partly by reducing depression symptoms in the mothers  (published here). 

REBECCA

Individually tailored nurse navigation for distressed breast cancer patients

Women with breast cancer may experience a number of physical and psychological symptoms during treatment. Some patients are able to manage their symptoms through the existing services and with support from their own network. However, we also know that a sub-group of patients struggle with navigating the health care system and report unmet need for support. In the Rebecca study, we examine if we can improve rehabilitation for women with breast cancer who experience severe psychological distress.

The REBECCA study was conducted as a randomized controlled trial (ClinicalTrials.gov Identifier: NCT03254875) examining the effect of individually tailored nurse navigation for distressed (score above 7 on distress thermometer) breast cancer patients on psychological and physical symptoms. We included 320 patients with breast cancer over a two-year period.

Patients were randomized to either standard care or a 6-months intervention where patients systematically report symptoms and receive sessions with a nurse navigator. In the nurse-navigation sessions patient receive psychoeducation on symptoms, support and motivation for self-management of symptoms and referral to the hospital clinics and municipality rehabilitation centers when needed. The project nurse may also refer to up to six sessions with a psychologist. In order to measure the effect of the REBECCA intervention, women reported symptoms before surgery and after 6, 12, and 18 months.

Our findings suggest that support to psychologically vulnerable breast cancer patients  may reduce symptoms of depression and improve quality of life. We did not find significant benefits on psychological distress, which was the main focus of the study.  Still, the results are important as we have taken the first steps to find ways to support the vulnerable breast cancer patients and we found that especially socially vulnerable breast cancer patients with short education or living alone benefitted significantly from the support from a nurse navigator. The study holds great potential for identifying and targeting individualized nurse-navigation to women with breast cancer who are especially vulnerable.  The results have been published in Jama Network Open here.

Children with Life-limiting Disease

Nationwide studies on disease burden and mortality

Pediatric life-limiting disease is a disease group that encompass life threatening diseases where cure may be possible (e.g. acute  leukemia) and diseases developing slowly and worsening over many years with no realistic hope for cure (e.g. low grade brain  tumors). The largest disease group of children who have a life-limiting disease suffer from pediatric cancer, which own their own are rare conditions. There is a paucity of knowledge about the disease burden, as well as prognostic risk factors in this disease group:  What should the family of a child with a life-limiting disease such as cancer expect in terms of disease burden, hospitalization and  prognosis? Who should be offered specialized pediatric palliative care?

In a collaboration with experts in register-based studies at the Danish Cancer Institute and clinical experts from Rigshospitalet, we will conduct the first nationwide, register-based cohort study of all Danish children with a first life-limiting disease diagnosed  between 1995 to 2021. In this cohort, we will examine both total disease burden (e.g. hospitalizations, intensive care, general practitioner and medication) and prognosis, as well as risk factors across major disease groups. Furthermore, we will examine if  there are sub-groups of pediatric patients who are not receiving specialized pediatric palliative care in the healthcare system  today.

The results of the study will be essential for the development of clinical recommendations regarding the treatment and care needs  of children with life-limiting pediatric disease. This may support an early integration of palliative care and strengthen accessibility  to the specialized pediatric palliative care programs in Denmark. Ultimately, we hope that the results of the study will contribute to  improving quality-of-life in children with life-limiting disease and their families.

SOFUS

Support for families with children with a life-limiting disease

When a child is diagnosed with a life-limiting disease, the whole family is affected. With a life-limiting disease, there is no  reasonable hope of cure and the child or young person will die before reaching adulthood. The ill child, parents and siblings can  experience symptoms of distress, including sleep problems, anxiety, depression and complicated grief. Studies show that losing a  child is the most traumatizing loss one can experience. In 2015, the first palliative team for children and youths was established in  Denmark. In spite of recent increased focus on the needs of families with children with a life-limiting disease, we still lack an  evidence model for how to support the whole family in coping with the grief.

The aim of the SOFUS study is to develop and pilot-test a psychological intervention for the whole family. The intervention consists of psychologist sessions in the family’s home. The family will be introduced to videos and tools/exercises developed to support the family in managing grief reactions, learning to meet important needs, increasing self-care and strengthen communication. The goal is to improve the family’s ability to cope with daily life and to prevent or reduce distress symptoms.

In a development and feasibility study, we will recruit up to 16 families via the two palliative teams for children and youths in the Capital Region and Region Central Denmark. Should this evaluation give positive results, it will be relevant to test the intervention in a randomized controlled trial.

SLEEP NOW

Cognitive behavioral therapy and physical exercise targeting insomnia in men with prostate cancer: A feasibility randomized controlled trial

Many cancer patients experience sleep problems where they can have difficulties falling asleep, with staying asleep or with a decreased quality of sleep. For some patients the sleep quality may be so poor that it can be considered insomnia with  consequences for quality of life and long-term increased risk of e.g. obesity, diabetes, depression and cardiovascular disease.

In the SLEEP-NOW study, we have developed and feasibility tested a new sleep intervention for prostate cancer patients, who have  insomnia, in a pilot randomized controlled trial. The intervention is a 3-month program combining two promising components of  cognitive-behavioral therapy for insomnia (CBT-I) and an exercise program supervised by physiotherapist. We included 12 patients  and they were followed for 6 months. We are currently evaluating feasibility comprising adherence to the intervention and  measurements, retention as well as acceptability and satisfaction with the study. As secondary outcomes, we measure  development in sleep, physical activity and psychological well-being measured by self-reported data, as well as by actigraphy,  which is a non-invasive wrist watch that measures movement throughout a day. We hope to publish the first results from the study  in 2023.

The study holds great potential for identifying and treating sleep problems in prostate cancer patients who have insomnia. The intervention is also relevant for how to address sleep problems in other cancer patients in the future.

Epilepsy in Glioma

Does epilepsy and use of medications for the treatment of epilepsy influence survival among patients with primary brain tumors?

Brain tumors are the second most common tumor types among men and the third most common among women aged 15-39  years. Glioma is a rapidly growing type of primary brain tumor with a dismal prognosis, and it constitutes about 80% of all  malignant brain tumors.

The survival for patients who harbor the most malignant form of glioma is slightly over a year, and the less malignant gliomas can  transform into more malignant ones over time.

Epilepsy is a symptom of glioma among 50-90% of the glioma patients. Many of them experience epileptic seizures years before  being diagnosed with glioma, others simultaneously with the diagnosis, while for a last group, seizures occur later on in the course  of the disease.

Recent research indicates that epilepsy and use of certain medications for the treatment of epilepsy may play a role for survival  after a glioma diagnosis.

The aim of this project is to examine whether occurrence of epilepsy as a symptom of glioma and use of certain types of  medications for the treatment of epilepsy have a positive effect on survival among these glioma patients. This will be achieved  through a nationwide cohort study using Danish Health Registries. The results of this project will be relevant not only to patients  and their relatives, but also to physicians that are in charge of diagnosing and treating these glioma patients. The clarification of  whether epilepsy plays a role in the prediction of survival after a glioma diagnosis will be important for future clinical practice and  guidelines developed for the treatment and follow-up of glioma patients. For the individual patient, the results may potentially  influence how the patient is informed about the disease, which type of medication the patient will be offered for the treatment of  epilepsy, and how follow-up by the physician will take place. The results have been published here, here,  and here.

NAVIGATE

Improving survival in vulnerable lung cancer patients through nurse navigation, symptom monitoring and exercise

Resilient Caregivers

Systematic support for informal cancer caregivers

Informal cancer caregivers refer to close family members (e.g. spouse) or friends who provide practical and emotional support to the cancer patient during and after treatment. Being an informal cancer caregiver is stressful, and many caregivers suppress their own needs to focus on the needs of their ill loved-ones. Previous research has shown that up to half of all caregivers of cancer patients show clinical symptoms of anxiety and depression but few seek help. In Denmark, there is no systematic support available for caregivers. Very few interventions for cancer caregivers have been investigated in a randomized trial, and many of these interventions were not based on a theoretical framework.

“Resilient Caregivers” is a novel, resilience-based group intervention targeting psychologically distressed partners of cancer patients. Resilience is commonly referred to as the ability to “bounce back” despite experiencing a stressful or adverse event, such as a cancer diagnosis in a loved-one. “Resilient Caregivers” was developed in collaboration with the Danish Cancer Society’s Counselling Center in Herlev and consists of six weekly group session, followed by a booster session one month later. Each session focuses on the different challenges faced by partners of cancer patients. In this randomized trial with 80 participants, we will investigate the effects of the intervention on psychological and physical symptoms such as anxiety, distress, depression and sleep problems at 3, 6 and 12 months follow-up.

This project was carried out in collaboration with Herlev Hospital and the Danish Cancer Society Cancer Counselling Centers in Herlev and Odense.  Recruitment started in May 2021 and ended in January 2023. Data collected is expected to be completed in June 2024.  This study is registered at ClinicalTrials.gov (NCT04610034) and the study protocol was published in 2021 and can be found here.

MOVING CLOSER

Sexuality and intimacy after cancer

We know from clinical research that cancer patients are at risk for sexual and relational problems, during treatment and several  years after their diagnosis. The patients are vulnerable to changes that may impair their sexual functioning and capacity for  intimacy and ultimately lead to damaged self-esteem, relationships and loss of life quality. However, knowledge about the sexual  health of Danish cancer patients compared to the general population is scarce. We will use data from Project SEXUS including  information on a large national sample of 62,675 participants (including 3.135 participants with a history of cancer) and validated  questionnaire data, on the interplay between physical, mental and sexual health. In addition, the need for communication about  sexual and partnership-related issues is generally neglected in clinical practice, and oncology is permeated by a “two-way taboo”,  where neither patients nor health-care providers dare to bring up sensitive topics concerning sex, intimacy or relationship issues.

MOVING CLOSER aims to establish population-based evidence concerning the sexual and relational functioning and quality-of-life  of Danish cancer patients and to utilize these results to qualify an outreach program targeted at health-care professionals in  oncology. We propose the following two work packages:

• Work package 1: Who is at risk? An epidemiological investigation of sexual and relational health and well-being in Danish cancer patients aged 15-89 years compared to healthy controls
• Work package 2: How to move closer? A study aimed at developing and pilot-testing a short, intensive online education program targeting health professionals’ communication skills to improve cancer patients’ sexual and intimacy-related competencies

MOVING CLOSER will generate insights based on a large and highly nuanced dataset in a tabooed and often disregarded research area of major importance to individual thriving as well as to public health at large. The project will produce important new knowledge about the sexual ramifications of cancer, across genders, age groups, sociodemographic characteristics and different subtypes of cancer. This knowledge will be translated into an education program to directly improve relevant health professionals’ communication skills.

FALCON

A study on grief in families who lost a parent

When you lose a partner and the parent of your children, your life and worldview will change dramatically. Some parents express that  they have to “learn to become a family in a new way”. The fact that you as a parent must be there for the children, while at same time struggling with your own grief may be strenuous. Many parents experience support from family and friends especially in the early period after the loss, but this may not always be sufficient and the support may also fade over time. For some the loss may have serious psychological consequences where everyday life becomes a challenge. Approximately 10 - 20% of adults, who experience loss, develop complicated grief (separation anxiety, problems with moving forward after the loss and feeling a lack of purpose with life) while around 7% experience chronic depression. The needs of bereaved families with young children are not well studied and there is currently no systematic support available for these families in the health care system.

FALCON is the first prospective nationwide cohort of families with children below age 18 years. The purpose of the FALCON study is to collect and communicate knowledge on, how the family is influenced by the loss of a partner and a parent. We developed questionnaires and participant information with help from families of young children, who have lost a mother or father. Families with children below age 18 years who lost a parent died in Denmark between April 2019 and July 2021. were invited to participate approximately two months after their loss. Both parents and children were asked to fill out questionnaires at three timepoints: two months after the loss, and at 6, 13 and 18 months after study inclusion. We have published a paper describing the establishment of the FALCON cohort here.

This will be one of the first studies to investigate the loss of a parent at the family-level with data collected from both the bereaved parent and children and documenting changes over time. Our results will contribute to the knowledge needed to identify potentially vulnerable families and develop the relevant supportive interventions.