Cristina Hendrix, DNS

The goals of the study are to investigate the needs of older (age 60+) caregivers caring for adults with cancer at 1-week and 2 weeks following hospital discharge and to explore strategies that may assist caregivers in their home caregiving needs. This study will explore how these needs vary based on caregiver spirituality and relationship with the care recipient.

The study will enroll cancer patients and their caregivers admitted to 9100 and 9300, which are the hematological and non-hematological malignancy units at Duke University Medical Center (DUMC) respectively. Results of this study will lay the groundwork for creating tailored interventions for caregivers that are compatible to their preferences and more responsive to their needs.

Baseline demographic data about the caregiver and patient will be collected at patient beside prior to hospital discharge. Qualitative interviews will be conducted with the cancer caregivers in their home at 1-week after their loved one was discharged from the hospital, and at 2-weeks after discharge from the hospital. This study utilizes a qualitative descriptive design.

Older Cancer Caregiver Needs Post Hospital Discharge

Needs of Older Caregivers of Adults With Cancer In the First 2 Weeks Following Hospital Discharge

Explore the needs (e.g., psychosocial) of older adults caring for a loved one with cancer at home during the first and second weeks after hospital discharge, and determine how these needs vary by spirituality and relationship to the care recipient.

Identify the strategies used by older caregivers during the first and second weeks after hospital discharge, and determine how these strategies vary by spirituality and relationship to the care recipient.

Describe the preferences of support and assistance (e.g., family/friends) of older caregivers in caring for a loved one with cancer at home during the first and second weeks after hospital discharge, and determine how these preferences vary by spirituality and relationship to the care recipient.

Explore whether caregiver needs and preferences vary with time (1 week versus 2 weeks post hospital discharge).

The Reed Foundation, Ruth Landes Memorial Research Fund

Duke University

Neoplasms

All Conditions

Behaviors and Mental Disorders

Skin and Connective Tissue Diseases

Rare Diseases

Fibromatosis, Aggressive

Aggression

Fibroma

Neoplasms, Fibrous Tissue

Neoplasms, Connective Tissue

Neoplasms, Connective and Soft Tissue

Neoplasms by Histologic Type

Quality of Life

Desmoid Tumor

People who have been diagnosed with a desmoid tumor after the age of 18

No Intervention

Rebekka Hoffmann, M.Sc. Psychology

Martin Eichler, Dr., PHD

Martin Eichler, M.Sc. / PHD

Martin Eichler, PhD

Martin Eichler, Dr., M.Sc. / PHD

The main aim of the study is to assess the situation and quality of life of desmoid patients. Impaired areas of quality of life and the associated factors are to be identified. The survey is planned as a cross-sectional study (patient survey).

Prevalent and incident desmoid patients will be identified at the University Hospital Mannheim and checked for eligibility. Quality of life and patient-reported data are collected by means of written questionnaires. Medical data is collected from patient files in the clinics. The aim is to include 100 patients. Descriptive analyses of the variables collected and regression models are planned as statistical analysis.

Burden of Disease and Living Situation in Desmoid Patients

Health-Related Quality of Life Questionnaire

The BPI scale defines pain as follows: Worst Pain Score: 1 - 4 = Mild Pain. Worst Pain Score: 5 - 6 = Moderate Pain. Worst Pain Score: 7 - 10 = Severe Pain.

Reintegration to normal living as a proxy to quality of life

SOS Desmoid e.V.

Universitätsmedizin Mannheim

Technische Universität Dresden

Heart and Blood Diseases

Blood and Lymph Conditions

Immune System Diseases

Urinary Tract, Sexual Organs, and Pregnancy Conditions

Gland and Hormone Related Diseases

Multiple Myeloma

Neoplasms, Plasma Cell

Prostatic Neoplasms

Breast Neoplasms

Lymphoma

Thyroid Neoplasms

Thyroid Diseases

Hemostatic Disorders

Blood Coagulation Disorders

Vascular Diseases

Paraproteinemias

Blood Protein Disorders

Hematologic Diseases

Hemorrhagic Disorders

Lymphoproliferative Disorders

Immunoproliferative Disorders

Lymphosarcoma

Health professionals, patients associations

Focus groups and qualitative interview will be conducted with patients, caregivers and stake-holders trying to identify unmet needs of cancer survivors after the acute treatment phase. Individual interviews (in presence or online) will be hold as alternative if it will not be possible (due to logistical or personal problems) to participate in a focus group or if the number of people who would have agreed to participate in that focus group is less than 3

Focus Groups or Interviews

Angela Contri, MA

Stefania Costi, PhD

Luca Ghirotto, PhD

Martina Torreggiani, MSc

Monica Guberti, PhD

This qualitative study seeks to explore the unmet needs of individuals who have recently undergone a cancer diagnosis and completed the acute phase of treatment. The primary objective is to utilize the experiences of patients, caregivers, and stakeholders to enhance the aftercare provided to cancer survivors. By delving into patient perceptions regarding unmet needs in cancer aftercare, the study aims to identify areas for redesigning and improving services to minimize these needs and ultimately enhance patient outcomes. Importantly, the investigation incorporates insights from patients, their caregivers, and stakeholders.

The research will employ qualitative methods, specifically focus groups and interviews, to gather comprehensive perspectives from individuals in the Ausl IRCCS Reggio Emilia district who have completed treatment for breast, prostate, colorectal, thyroid, and multiple myeloma cancers. Including patients with diverse cancer types is crucial for capturing a broad spectrum of experiences.

During data collection, both focus group discussions and interviews will be recorded in audio format and transcribed verbatim. This meticulous approach ensures an accurate representation of participants' voices and experiences. The subsequent analysis will employ a combination of framework and thematic analysis to extract meaningful insights and synthesize the data effectively.

The study's ultimate goal is to leverage the findings to optimize aftercare services for cancer survivors within the local context of Ausl IRCCS Reggio Emilia. By incorporating the perspectives of patients, caregivers, and stakeholders, the research aims to contribute valuable insights that can inform the redesign and improvement of aftercare services, ultimately benefitting cancer survivors in the region.

The escalating global population of cancer survivors (CSs) underscores the imperative to offer services tailored to address their specific unmet needs. Individuals are designated as 'cancer survivors' from the moment of diagnosis onward throughout their lifetime. Despite this, there is a worldwide acknowledgment that CSs encounter a spectrum of physical, psychosocial, spiritual, informational, and practical challenges, often leading to unmet needs that frequently go unrecognized and unaddressed.

Unmet needs, in this context, refer to those requirements perceived by individuals as lacking the necessary level of service for achieving optimal well-being. These can be characterized as unsatisfied needs for which CSs desire additional assistance or support. A profound comprehension and measurement of CSs' unmet needs play a pivotal role in identifying gaps in their care experiences, providing an opportunity to deliver patient-centered services.

Effective care delivery not only enhances patient outcomes and quality of life but also contributes to increased satisfaction with care. This, in turn, may lead to a reduced demand for health and social care services. The qualitative study outlined here seeks to delve into the unmet needs of individuals who have undergone a cancer diagnosis within the past years and have completed the acute phase of treatment.

The study aims to leverage the experiences of patients, caregivers, and stakeholders to optimize cancer survivorship care. Specifically, the investigation will focus on the unmet needs of cancer survivors post the acute treatment phase for some of the most prevalent forms of cancer with a life expectancy of at least five years.

Namely:

1. To investigate the unmet needs perceived by cancer survivors in AUSL IRCCS Reggio Emilia setting.
2. To determine the area of impact on health encompassed by those unmet needs to create a direct link to the ICF.
3. To determine which Patient Reported Outcome Measure aimed at identifying cancer survivors' unmet needs will best investigate those ICF components connected to common cancer survivors' unmet needs to implement it in their routine assessment.
4. To identify the services that need to be implemented to provide support to the true needs of local cancer survivors.
5. To develop a Survivorship care plan model coherent with patients' expectations and health care system economic resources.

Utilizing focus groups and interviews, the research will recruit participants from the AUSL - IRCCS Reggio Emilia district who have completed treatment for breast, prostate, colorectal, thyroid, and multiple myeloma cancers. The study will adhere to a structured schedule for conducting focus groups and interviews, accommodating participants in individual interviews if logistical or personal challenges arise.

Each focus group, homogeneous in terms of pathology, will include 4 to 8 participants, with a total ranging between 30 and 60 participants based on Krueger's recommendations. Audio recording and verbatim transcription of focus groups and interviews will facilitate subsequent framework and thematic analysis to extract meaningful insights.

The study's objectives encompass investigating perceived unmet needs, determining the health impact linked to these needs within the International Classification of Functioning, Disability, and Health (ICF), identifying suitable Patient Reported Outcome Measures, pinpointing services for implementation, and developing a Survivorship care plan model aligning with patient expectations and healthcare system resources.

The focus groups and interviews, including patients with or without linked caregivers, will be systematically transcribed and analyzed using framework and thematic analysis methodologies.

The Unmet Needs of Cancer Survivors in Ausl IRCCS Reggio Emilia

The Unmet Needs of Cancer Survivors in Ausl IRCCS Reggio Emilia Reality: A Qualitative Study and Framework Analysis

Recording will be anonymised and transcripted verbatim. This anonimised material could be shared with other researchers on request

Evaluation from the patients' point of view on their perception of unmet needs, which are those needs that lack the level of service an individual perceives as necessary to achieve optimal well-being. Semi-structured qualitative interviews will be conducted with patients' participating in the study to collect information and description of unsatisfied needs for which cancer survivors would like to receive more assistance or support. These may include (as an example): Stress or other psychological demands, Informational needs, Physical needs, Spiritual needs, among others.

Azienda USL - IRCCS di Reggio Emilia

University of Modena and Reggio Emilia

Respiratory Tract (Lung and Bronchial) Diseases

Digestive System Diseases

Kidney Diseases

Heart Failure

Lung Diseases

Liver Diseases

Urologic Diseases

Urogenital Diseases

Female Urogenital Diseases

Pregnancy Complications

Female Urogenital Diseases and Pregnancy Complications

Male Urogenital Diseases

Gastrointestinal Diseases

Jan Christensen

Purpose: To determine unmet functional needs in patients referred to the Palliative Care Unit at Rigshospitalet, Copenhagen University Hospital will be asked to fill out self reported questionnaires regarding problem intensity, problem burden and felt needs, physical functioning, emotional functioning, fatigue, sleep, distress. Furthermore patients physical function will be evaluated.

Physical functioning is found to be an important predictor for survival and physical ability 'to do what one wants' affects quality of life in cancer patients in palliative care and their spouses. Despite this, physical functioning is reported as a neglected dimension in palliative care quality of life outcome measures, and advanced cancer patients report that they do not receive the help they need. The vast majority of patients with advanced cancer described unmet palliative care needs, and with the most frequently reported problems being; fatigue (73%), limitations doing physical activities (65%), limitations in work and daily activities (58%), worry (58%), difficulties with sexuality (54%), pain (52%) and problems with concentration (43%). Furthermore, limitations in physical functioning and physical activity is a leading cause of distress and psychological problems a rehabilitative approach in palliative care integrated in the interdisciplinary interventions to the patients must be maintained throughout the entire illness trajectory from diagnosis through treatment, rehabilitation and palliative care to address such problems.

However, prevalence of patient unmet needs and reported physical functioning and performance is reported to differentiate largely between palliative units.

In order to address the functional needs of patients receiving specialist palliative care studies of their specific needs are required. Therefore, the aim of this study is to investigate the patient reported unmet needs for function and supportive occupational- and physiotherapy rehabilitation interventions in the palliative unit at Copenhagen University Hospital, Rigshospitalet. Furthermore, we aim to investigate if observations, additional disease-specific patient reported outcomes and assessment of physical function and performance can support the unmet needs.

Patient Reported Unmet Needs for Function and Supportive Occupational- and Physiotherapy Rehabilitation Interventions

Patient Reported Unmet Needs for Function and Supportive Occupational- and Physiotherapy Rehabilitation Interventions in a Palliative Care Setting

The Three-Levels-of-Needs Questionnaire (3LNQ)

Maximum strength test by handgrip dynamometer

Hospital Anxiety and Depression Scale (HADS)

Functional Assessment of Cancer Therapy - Fatigue (FACT-F) 13 item fatigue subscale

The Canadian Occupational Performance Measure (COPM)

International Physical Activity Questionnaire (IPAQ) short form

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Older Cancer Caregiver Needs Post Hospital Discharge	NCT02099526	Cancer Caregive...		18 Years -	Duke University
Burden of Disease and Living Situation in Desmoid Patients	NCT06258421	Desmoid Tumor Quality of Life	No Intervention	18 Years -	Technische Universität Dresden
The Unmet Needs of Cancer Survivors in Ausl IRCCS Reggio Emilia	NCT06236373	Cancer Breast Cancer Prostate Cancer Thyroid Cancer Colorectal Canc... Lymphoma Multiple Myelom... Neoplasms	Focus Groups or...	18 Years -	University of Modena and Reggio Emilia
Patient Reported Unmet Needs for Function and Supportive Occupational- and Physiotherapy Rehabilitation Interventions	NCT04066153	Cancer Kidney Diseases Heart Failure Neurologic Diso... Liver Diseases Pulmonary Disea... Side Effect Quality of Life Physical Disord...		18 Years -	Rigshospitalet, Denmark

Spots Global Cancer Trial Database for unmet needs

Every month we try and update this database with for unmet needs cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Spots Global Cancer Trial Database for unmet needs

Every month we try and update this database with for unmet needs cancer trials from around the world to help patients and their families find trials that might be right for them. We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Every month we try and update this database with for unmet needs cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.