International Psycho-Oncology Society Research Articles

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

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). 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. 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%). 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.

Survivorship representation at IPOS World Congress: abstract review and analysis

Abstract Background: Advancements in cancer treatments have enabled more people worldwide to survive cancer, but many experience lasting impacts. The International Psycho-Oncology Society (IPOS) is a global professional organization which hosts an annual World Congress. This study reviewed survivorship content from the World Congress meetings to understand areas of focus, apparent strengths and weaknesses, and global representation. Methods: Peer-reviewed abstracts presented in 2017, 2018, 2019, and 2021 were reviewed. Abstracts were identified by searching for “survivor.” Identified abstracts were read in full to extract content of interest (population of interest, cancer type, number of participants, study design, study topic, first author/country, and international collaboration). Coding was defined a priori. Data were extracted using REDCap. Inter-rater reliability checks were performed. Results: A total of 1813 abstracts were identified and reviewed. The proportion of survivorship-focused abstracts ranged from 13.2%–20.7% annually. Breast cancer dominated survivorship work. The most frequently addressed topics included distress/anxiety/depression (36.6%), quality of life (28.6%), and health behaviors (15.5%). Nearly three-quarters (73%) of abstracts focused on adult populations, and there was apparent international collaboration in 12%–20%. Authorships and abstracts were primarily from high-income countries (91%). Most studies were observational (44%); few were randomized controlled trials (4%). Conclusions: This study found overrepresentation of authorship from some countries. Many topics, patient populations, and countries were not highly represented. IPOS might consider efforts to remedy this imbalance with the ultimate goal of improving psychosocial care for those affected by cancer, globally.

Disparities and barriers in the assessment of psychological distress, access to and use of psycho-oncological support in Europe: current perspectives.

The implementation of psycho-oncological support has shown important results in positively influencing treatment outcomes and quality of life in cancer patients and survivors. In the last few decades, the importance of mental health has been brought to attention to the general public and healthcare professionals on a national, institutional and organisational level. Official guidelines, policies, and training programs have been developed suggesting that psycho-oncological support should be considered as a non-negotiable requirement for quality cancer care in many hospitals and clinical centres across Europe. Health organisations, associations, institutions, and societies, such as the International Psycho-Oncology Society (IPOS) and the European Partnership for Action Against Cancer (EPAAC), are forming alliances, funding research projects and organising congresses in order to study, understand, and discuss the reasons for barriers and disparities in psycho-oncological support and, eventually, to overcome the existing cancer divide. Nevertheless, the World Health Organization's (WHO) estimations indicate that the cancer burden is still increasing, and relevant barriers and disparities in accessing psycho-oncological support continue to exist and influence the health conditions and quality of life of cancer patients and survivors. The present work will present the current disparities and barriers regarding assessment, access to and use of psycho-oncological support in the countries of the European Union, making suggestions for further research and possible solutions.

Healthcare providers' perceptions about the unmet needs of their patients with cancer across healthcare systems: results of the International Psycho-Oncology Society survivorship survey.

Systematic understanding of patients' unmet needs is essential for providing effective supportive care. This study sought to compare the unmet needs of patients with cancer identified by health care providers (HCPs) among four major healthcare systems. HCPs (n = 247) participated in the International Psycho-Oncology Society (IPOS) Survivorship Online Survey, evaluating their patients' unmet needs. The country of HCPs was grouped into four major healthcare systems: Beveridge model, Bismarck model, National Health Insurance model, and out-of-pocket model. Most HCPs were from countries with the Bismarck model. Substantial levels (> 50%) of unmet needs in all domains are reported across the four healthcare systems. Pediatric patients/survivors living in countries under out-of-pocket healthcare model were evaluated to have less unmet needs for managing decline in physical or cognitive functioning and insomnia/sleep difficulty/fatigue, than those in countries under Beveridge, Bismarck, and National Health Insurance models. Moreover, middle-aged patients/survivors under Beveridge and National Health Insurance models were likely to have greater unmet needs for dealing with cancer-related financial concerns than those under Bismarck model. This study provides valuable insights into the unmet needs of patients with cancer in different healthcare systems, highlighting the significance of targeted interventions to address the unique needs of patients across diverse healthcare systems. Further investigation is warranted to identify the system factors associated with patients' unmet needs, enabling the development of effective healthcare policies and interventions to comprehensively address the multifaceted needs of patients with cancer.

Healthcare professionals’ perspectives on the unmet needs of cancer patients and family caregivers: global psycho-oncology investigation

This international study aimed to compare healthcare professionals' perspectives on the unmet needs of their cancer patients with those of family caregivers and to investigate the degree to which patients' age group moderates the associations. Healthcare professionals involved in the care for cancer patients and their family caregivers were invited to participate in the International Psycho-Oncology Society (IPOS) Survivorship Online Survey. A total of 397 healthcare professionals from 34 countries provided valid study data. The participants evaluated whether the unmet need was the same for all age groups of patients and the degree of their patients' needs not being met per patients' age group. They evaluated the same questions for family caregivers. Patients' unmet needs in medical care were evaluated as greater than those of caregivers across all age groups. On the other hand, pediatric patients' unmet needs for spiritual concerns, sexuality/intimacy, and insomnia/fatigue were evaluated as greater than those of caregivers, whereas adolescent and young adult patients' unmet needs for symptom management were greater than those of caregivers. Patients' other unmet needs were evaluated as comparable with those of caregivers regardless of age groups. The findings provide insights how best healthcare providers stratify resources to address the unmet needs of patients and caregivers by the patients' age. Development of systematic assessment of unmet needs and provision of interventions tailored for patients' lifespan to address the unmet needs of cancer patients, and caregivers are warranted.

International collaboration for assessing unmet needs of cancer survivors and family caregivers: Lens of healthcare professionals.

Cancer patients and their family caregivers have reported various needs that are not met. Recognition of the unmet needs by healthcare professionals may be a first step to adequately and systematically addressing them. Thus, the International Psycho-Oncology Society Survivorship Online Survey was developed to measure healthcare professionals' evaluation about the unmet needs of their patients and family caregivers around the globe. The survey was developed in English and translated to additional 14 different languages. The survey was distributed on the web-based REDCap application to over 50 psycho-oncology societies and their networking platforms as well as social media and to authors who have published in psycho-oncology journals globally. A total of 1472 participants from 36 countries at least partially completed the survey. Healthcare professionals evaluated needs for managing one's emotional distress and patients' medical care and symptoms as the most common concerns for both patients and their family caregivers across all patient age groups. Less than two-thirds of the participating healthcare professionals reported that their institution had services or programs to address the needs of the patients or caregivers. Findings suggest several directions for further analyses to provide more specific information that would be readily translated into clinical practices, research, and policy aimed to enhance the quality of life of cancer patients, survivors, and family caregivers around the globe. In addition, this collaborative effort also hints at the importance of establishing international networks to promote equity in care for people touched by cancer worldwide.

Same storm, different boat: The global impact of COVID-19 on palliative care.

ObjectiveThe COVID‐19 pandemic has had a complex and profound impact on the provision of palliative care globally. To support learning from palliative care providers and researchers worldwide, the Education Subcommittee of International Psycho‐Oncology Society (IPOS) Palliative Care Special Interest Group developed a webinar with presentations by and discussion with eight international palliative care leaders.MethodsPresentations were content rich; the speakers used both quantitative (e.g., sharing recent statistical findings) and qualitative (e.g., narrative storytelling, anecdotal experiences) approaches to portray the effect of COVID‐19 in their region. Subsequent to the webinar, the committee collectively identified five themes conveyed by the presenters through consensus.ResultsThe themes included: (1) altered accessibility to palliative care, with socio‐economic status impacting virtual health availability; (2) reduced opportunities to preserve dignity, as survival has been prioritized over preserving the humanity of patients and their loved ones; (3) complicated grief and bereavement arising from social distancing requirements; (4) greater awareness of the importance of sustaining health provider well‐being; and (5) the development of valuable innovations across nations, institutions, disciplines, and communities.ConclusionsOverall, the webinar facilitated valuable connection for global learning and identified opportunities for research and clinical interventions. In an ongoing crisis that has exacerbated isolation, we will need to continue to learn and lean on one another as a global community to navigate ongoing challenges of the COVID‐19 pandemic.

Setting an International Research Agenda for Fear of Cancer Recurrence: An Online Delphi Consensus Study.

BackgroundFear of cancer recurrence (FCR) is common amongst cancer survivors. There is rapidly growing research interest in FCR but a need to prioritize research to address the most pressing clinical issues and reduce duplication and fragmentation of effort. This study aimed to establish international consensus among clinical and academic FCR experts regarding priorities for FCR research.MethodsMembers of the International Psycho-oncology Society (IPOS) Fear of Cancer Recurrence Special Interest Group (FORwards) were invited to participate in an online Delphi study. Research domains identified in Round 1 were presented and discussed at a focus group (Round 2) to consolidate the domains and items prior to presentation in further survey rounds (Round 3) aimed at gaining consensus on research priorities of international significance.ResultsThirty four research items were identified in Round 1 and 33 of the items were consolidated into six overarching themes through a focus group discussion with FCR experts. The 33 research items were presented in subsequent rounds of the delphi technique. Twenty one participants contributed to delphi round 1, 16 in round 2, and 25 and 29 participants for subsequent delphi rounds. Consensus was reached for 27 items in round 3.1. A further four research items were identified by panelists and included in round 3.2. After round 3.2, 35 individual research items were ratified by the panelists. Given the high levels of consensus and stability between rounds, no further rounds were conducted. Overall intervention research was considered the most important focus for FCR research. Panelists identified models of care that facilitate greater access to FCR treatment and evaluation of the effectiveness of FCR interventions in real world settings as the two research items of highest priority. Defining the mechanisms of action and active components across FCR/P interventions was the third highest priority identified.ConclusionThe findings of this study outline a research agenda for international FCR research. Intervention research to identify models of care that increase access to treatment are based on a flexible approach based on symptom severity and can be delivered within routine clinical care were identified as research areas to prioritize. Greater understanding of the active components and mechanisms of action of existing FCR interventions will facilitate increased tailoring of interventions to meet patient need.

Integrating fear of cancer recurrence screening into routine care: opportunities and challenges

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Building the capacity for psycho-Oncology research: a survey of the research barriers and training needs within the International Psycho-Oncology Society.

The International Psycho-Oncology Society (IPOS) is a multidisciplinary professional network that aims to improve psychosocial care for individuals impacted by cancer. IPOS encourages research activity, recognizing that a high-quality evidence base is essential to provide best-practice, data-driven clinical care. This study aimed to determine the barriers to research involvement and the training needs and priorities of IPOS members, with the goal of facilitating the development of training resources tailored to the needs of IPOS members. A link to an online, cross-sectional survey was disseminated to all registered members of IPOS via email. The online survey platform SimpleSurvey was used, and questions included demographic characteristics and items related to research interests, involvement, and training needs. High priority research training needs were identified as research tasks respondents rated as highly important, yet possessed a low perceived skill level in. Thirty-two percent of IPOS members (n = 142) completed the survey. Participants represented 49 countries and were at a variety of career stages. Overall, participants reported spending an average of 17.3 hours per week on research (range 0-80 hours per week), with 69% of respondents wanting to increase their research involvement. The main barriers to research participation included lack of research funding (80%) and lack of protected time (63%). IPOS members identified 5 high-priority training needs: preparing successful grant applications; preparing research budgets; community-based participatory research; working with decision makers; and finding collaborators or expert consultants. Participants suggested funding access, statistical advisors, and networking and mentorship opportunities as ways to enhance research involvement. Members preferred online training modules (39%) and mentorship programs (19%) as methods by which IPOS could provide research support. IPOS was viewed as being able to contribute to many aspects of research capacity building such as networking, training, and dissemination of research findings. IPOS has an important role in encouraging research capacity building among members. This survey provides an agenda for workshops and training opportunities. Mainly, for respondents it was less about training in research methods and more about training in how to prepare successful grant applications, including budgets, and receiving mentorship on this as well as having opportunities to collaborate with other researchers.

Patients included at CAPO/IPOS World Congress of Psycho-Oncology 2019. Reflections from the invited advocates

Patients included at CAPO/IPOS World Congress of Psycho-Oncology 2019. Reflections from the invited advocates

Special Issue on eHealth Innovations and Psycho-oncology.

Psycho-OncologyVolume 29, Issue 1 p. 3-3 INVITED EDITORIAL Special Issue on eHealth Innovations and Psycho-oncology Maggie Watson, Corresponding Author Maggie Watson maggie.watson@live.co.uk Editor-in-Chief, Psycho-oncology Honorary Professor, University College London, UK. Honorary Research Associate Institute of Cancer Research, UK. International Psycho-Oncology Society, President EmeritusSearch for more papers by this author Maggie Watson, Corresponding Author Maggie Watson maggie.watson@live.co.uk Editor-in-Chief, Psycho-oncology Honorary Professor, University College London, UK. Honorary Research Associate Institute of Cancer Research, UK. International Psycho-Oncology Society, President EmeritusSearch for more papers by this author First published: 18 December 2019 https://doi.org/10.1002/pon.5308Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat No abstract is available for this article. Volume29, Issue1January 2020Pages 3-3 RelatedInformation

Mental distress evaluation and intervention for cancer patients*

Abstract Mental distress is prevalent among cancer patients. Many measurements have been developed to screen and evaluate such distress. About one-third of the persons with cancer will experience significant levels of distress, requiring targeted psychosocial intervention. Mental distress has been endorsed as the sixth vital sign by the International Psycho-Oncology Society (IPOS) in 2009. The need for effective screening and psychological interventions is well recognized as a necessary, integral part of oncology care. This systematic review examines the psychometric properties of the existing tools used to screen patients for emotional distress and the applicable intervention methods.

ПРОЦЕНА ДИСТРЕСА ОНКОЛОШКИХ ПАЦИЈЕНАТА НАКОН ЗАВРШЕТКА ЛЕЧЕЊА

The main aim of this study is to assess the level of distress among oncology patients a year and a half after the diagnosis of malignancy and completion of the combined oncology treatment (surgery, chemotherapy and/or radiotherapy). The second goal was to apply, for the first time in our country, the following world standards in the field of psycho-oncology set up by the National Comprehensive Cancer Network (NCCN) and the International Psycho-Oncology Society (IPOS) using a distress scale/distress thermometer on a sample of oncology patients who applied for psychological help and support in a private counseling center after completion of the oncological treatment. The examined sample consisted of 40 patients (30 women and 10 men) who, upon their first arrival at the counseling center and at the end of the initial psychological interview, were asked to fill the distress thermometer with the adequate explanations, provided that the self-assessment of the distress was significant to the further counseling psychological and/or psychotherapeutical treatment. The results of the whole sample showed that the highest percentage of patients examined (52.5%) evaluated various investigated problems as moderately stressful, 20% of patients assessed the problems as very stressful, 12.5% as slightly stressful and only 5% as not stressful. Related to practical problems, the largest percentage of patients assessed money and account payment issues (30%) and work - related issues (27.5%) as the most stressful. 22.5% of patients quote parenting and child care as the most stressful family problems. Concerning emotional problems, a significant percentage of patients (45%), quote concern and anxiety, 32.5% the existence of different fears, 22.5% sadness, and 20% irritability and tension as the most stressful emotional problems. 85% of patients stated that the fear of relapse of the disease is a problem that worries them the most. Patients in this study experience emotional problems considerably more stressful compared to other problems in the post-treatment period.

Journal of Psychosocial Oncology Research and Practice welcome editorial

Journal of Psychosocial Oncology Research and Practice welcome editorial

Progress toward integrating Distress as the Sixth Vital Sign: a global snapshot of triumphs and tribulations in precision supportive care

Abstract Background: The International Psycho-Oncology Society (IPOS) recognizes psychosocial cancer care as a universal human right. IPOS emphasized that distress should be measured as the 6th Vital Sign alongside temperature, blood pressure, pulse, respiratory rate, and pain. To date, >75 cancer care organizations and accreditation bodies have endorsed screening, monitoring, and treating the multifactorial symptoms of distress as an essential component to high-quality care. The degree to which this international commitment has translated into the integration of precision supportive care within clinical settings is unknown. Methods: Building upon a 2018 IPOS World Congress Symposium, this commentary provides 4 snapshots into the progress made toward integrating precision supportive care in India, Australia, Europe, and the United States. The commentary demonstrates the different approaches taken to develop screening practices or overcome barriers to comprehensive precision supportive care. Results: Although psychosocial cancer care is a universal right, service and patient barriers to implementation remain, such as: inadequate workforce distribution and service investment in psychosocial care; siloed teams and limited communication skills; and cultural challenges. Recurrent themes emerged which can be used to invigorate commitment to IPOS standards: ongoing capacity building of the international psycho-oncology community; supporting communication skills training and encouraging programmatic thinking within services; and advocating for ongoing investment in precision supportive care through evaluation and strong clinical leadership. Conclusions: In examining 4 unique settings, the commentary recognizes the geographic variation in health care resources and social contexts of cancer care alongside cultural perspectives on psychosocial distress, screening methods, and the value of precision supportive care.

Long-term efficacy and cost-effectiveness of blended cognitive behavior therapy for high fear of recurrence in breast, prostate and colorectal Cancer survivors: follow-up of the SWORD randomized controlled trial

BackgroundBlended cognitive behaviour therapy (bCBT) is an effective treatment for fear of cancer recurrence (FCR) in curatively-treated breast, colorectal and prostate cancer survivors with high FCR. However, long-term outcomes are unknown. This study investigated the long-term efficacy and cost-effectiveness of bCBT compared with care as usual (CAU).MethodsEighty-eight cancer survivors with high FCR (Cancer Worry Scale ≥14) were randomly assigned to bCBT (n = 45) or CAU (n = 43). Data were collected at baseline and at three, nine and fifteen months from baseline and analysed by modified intention-to-treat. Efficacy was investigated with linear mixed-effects models. Cost-effectiveness was investigated from a societal perspective by comparing costs with quality-adjusted life-years (QALYs).ResultsParticipants who received bCBT reported significantly lower FCR compared with CAU (mean difference of − 1.787 [95% CI -3.251 to − 0.323, p = 0.017] at 15 months follow-up), and proportionally greater self-rated and clinically significant improvement at each follow-up measurement. Total QALYs were non-significantly different between conditions when adjusted for utility score baseline differences (0.984 compared to 0.957, p = 0.385), while total costs were €631 lower (95% CI -1737 to 2794, p = 0.587). Intervention costs of bCBT were €466. The incremental cost-effectiveness ratio amounted to an additional €2049 per QALY gained, with a 62% probability that bCBT is cost-effective at a willingness to pay (WTP) threshold of €20,000 per QALY. Results were confirmed in sensitivity analyses.ConclusionsbCBT for cancer survivors with FCR is clinically and statistically more effective than CAU on the long-term. In addition, bCBT is a relatively inexpensive intervention with similar costs and QALYs as CAU.Trial registrationThe RCT was registered in the Dutch National Trial Register (NTR4423) on 12-Feb-2014. This abstract was previously presented at the International Psycho-Oncology Society conference of 2018 and published online. (Psycho-oncology, 27(S3):8-55; 2018)

Andrea Farkas Patenaude (1946–2018).

Presents an obituary for Andrea Farkas Patenaude (1946-2018). Patenaude was a pioneer in pediatric and adult psycho-oncology. Researcher, clinician, administrator, educator, mentor, and ardent patient advocate, she was a brilliant scientist-practitioner. She combined the highest academic standards with compassionate care for patients and families, demonstrating the important role psychologists can have in cutting-edge medical care. She was a founding member of the Pediatric Oncology Group Psychology Committee (later, COG Behavioral Science). At Harvard Medical School, she chaired the 2008 Joint Committee on the Status of Women. As Vice-Chair of the Psychosocial Committee, International Psycho-Oncology Society (IPOS), she worked to expose and end hospital detentions of children, to improve pediatric medical care internationally, and to increase collaboration with the International Society of Pediatric Oncology (SIOP). (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Jimmie Holland: The founder, developer, and the soul of the International Psycho-Oncology Society.

Jimmie Holland: The founder, developer, and the soul of the International Psycho-Oncology Society.

2016 President's Plenary International Psycho-Oncology Society: challenges and opportunities for growing and developing psychosocial oncology programmes worldwide.

Consistent with the International Psycho-Oncology Society's (IPOS) vision and goals, we are committed to improving quality cancer care and cancer policies through psychosocial care globally. As part of IPOS's mission, upon entering "Official Relations" for a second term with the World Health Organization (WHO), IPOS has dedicated much attention to reaching out to countries, which lack formalized psychosocial care programmes. One of IPOS's strategies to accomplish this goal has been to bring psycho-oncology training programmes to low- and middle-income countries and regions. To this end, the IPOS Board approved a new position on the Board of Directors for a member from a low- to middle-income country (LMIC). The IPOS 2016 President's Plenary focused on challenges and opportunities that exist in growing and developing psychosocial oncology programmes worldwide. The plenary presentations highlight how IPOS and WHO have aligned their goals to help LMICs support cancer patients as an essential element of cancer and palliative care. IPOS country representatives are strongly supported in liaising with national health authorities and with WHO Country Representatives in LMICs. The plenary speakers discussed the role IPOS Federation has taken in building a global network of psychosocial leaders and the impact this had in assisting LMICs in meeting IPOS's psychosocial care objectives. The plenary highlighted the challenges of expanding psychosocial reach into these countries. One significant question remains: Can psychosocial guidelines be adapted to LMICs and regions?