Insights Series, Issue 32: "Emotional care: the overlooked element in the cancer pathway"

Insights Series Issue 32 siemens-healthineers.com/ insights/improving-patient-experience Emotional care: the overlooked element in the cancer pathway Integrated approaches with medical technology and digital tools to support patients and clinicians A thought leadership paper on “Improving patient experience” SIEMENS Healthineers Preface The Insights Series The Siemens Healthineers Insights Series is our preeminent thought leadership platform, drawing on the knowledge and experience of some of the world’s most respected healthcare leaders and innovators. The Series explores emerging issues and provides you with practical solutions to today’s most pressing healthcare challenges. We believe that increasing value in healthcare—delivering better outcomes at lower cost—rests on four strategies. These four principles serve as the cornerstones of the Insights Series. Expanding Transforming Improving Digitalizing precision care patient healthcare medicine delivery experience Our Insights portfolio is an integrated collection of events, speaking engagements, roundtable discussions, and an expanding array of print and digital platforms and products all carefully curated to share ideas, encourage discussion, disseminate original research and reinforce our position as a healthcare thought leader. Please visit siemens-healthineers.com/insights-series Executive summary Stress, anxiety and emotional distress are present along The “Third Healthcare Revolution”, refers to the the entire cancer care pathway. These factors impact the revolution driven by individuals, digital and medical efficiency of diagnosis and treatment, patient outcomes, technology advances, and shared knowledge. This paper, time to recovery, and cost of care. But most important, based on a study we have implemented,2 proposes an they are significant burdens for the patient, as well as easily applicable approach for early detection of stress, family, friends, clinicians and society. Interest in positive anxiety, and emotional distress, along the entire cancer patient outcomes beyond survival is growing among pathway, using digital resources in connection with people with cancer, and is increasingly of interest to medical technology. It proposes a systematic application clinicians as well as those who pay for cancer services. of integrated therapies to improve clinical outcomes and The mitigation of anxiety and depression needs, early the well-being of patients. It also highlights the identification, followed by effective interventions. collaboration of healthcare providers, the medical Traditionally, this has been done by clinicians face-to- technology industry, individuals, the oncological face with the individual patient. In current times, face-to- disciplines of radiology, radiotherapy and chemotherapy face consultations have been constrained with many that are required for this revolution for integrated care to interactions limited to digital interfaces. However, the become a reality globally. most pressing challenge, now and in the future, remains the scarce time of clinicians. Those dealing with the Emotionally accompanying patients on the diagnosis and backlog of cases do not have, usually, this additional treatment phases of the cancer pathway can have a time. Indeed there is the possibility that the “cancer positive effect on the patient experience and contribute backlog” in some countries might not be cleared until to greater efficiency of healthcare institutions. 2033 unless more healthcare professionals are hired.1 Simply asking professionals to find additional time is fruitless. Other methods need to be tried and evaluated, for example digital methods and integrated approaches with medical technology. Siemens Healthineers Insights Series · Issue 32 3 The challenge Present and future challenges related to cancer Cancer rates, together with the related anxiety, stress, and depression continue to increase worldwide. The + 47% 50%-60% International Agency for Research on Cancer project projected 28.4 million new cancer cases worldwide by 2040, a 47% increase from the corresponding expected increase of of anxiety and depression cancer cases by 2040 goes unrecognized 19.3 million cases in 2020.3 More than half of patients relative to 2020 diagnosed with cancer suffer from moderate to high anxiety and depression, directly impacting the care experience and outcomes. It is estimated that between 50%-60% of anxiety and depression goes unrecognized4, and 50% of major depressions are untreated.5 For patients diagnosed with cancer, the cost of mood €170 billion disorders and anxiety in the EU is about €170 billion per year, and in the U.S. the estimated costs of treating a Annual cost of mood depressed patient are more than twice as high as treating disorders and anxiety a non-depressed patient: $235,337 compared to in Europe $110,650.6 Compared to individuals currently in the risk age of cancer, the problem is expected to worsen with Millennials and Generation Z, many of whom already feel generally anxious most of the time independent of a health problem.7,8 $110,650 is the avarage cost of treating a cancer patient in the U.S. $235,337 is the avarage cost of treating a depressed cancer patient in the U.S. 4 Issue 32 · Siemens Healthineers Insights Series “The problem is expected to worsen further with Millennials and Generation Z, many of whom already feel generally anxious most of the time independent of a health problem.” Delmar N. The Irish Times8 For many healthcare providers, anxiety and depression High anxiety associated with cancer risk can often are difficult to detect; up to 80% of the psychological and become an issue during diagnostic imaging psychiatric morbidity of patients with cancer goes consultations, whether they are onsite or online, as well unrecognized and untreated.4 An additional challenge is as during the recommended treatment programs. The stigmatization of the topic, misconception that anxiety is patient who turns up anxious and uninformed for a a problem not to be treated in the clinical environment, consultation with a clinician, who in turn is overwhelmed combined with a general resistance to integrate by data and reports, may find it difficult even to express emotional relief along the care pathway. Anxiety and what is worrying them most, let alone remember what depression affect workflows in healthcare, for example, the clinician says. These issues may trigger a negative additional preparation time is needed, joint-decision disposition from the patient, or even states of anxiety, or making is hindered, and patient and staff engagement depression. Furthermore, in current times expecting are reduced. Most healthcare systems manage patient clinicians to spend more time per patient is not a realistic anxiety and depression separately from the main option.9 Further exploration of how emotional needs of oncology care pathway. Processes and technology have patients and families affect key performance indicators been focused on dealing with cancer detection and can be found in the Siemens Healthineers Insights paper treatment, while psychological distress has not yet been “Reframing patient experience”.10 fully integrated. All of these affects the evaluation of care and health outcomes, represents a significant burden for The “Third Healthcare Revolution”, happening now, is society and healthcare systems. propelled by three powerful drivers: information, digital and medical technology advances, and people. It has increased demand on personalization, providing access to care, and improving quality of care including emotional well-being. Considering the statistics previously mentioned, cancer pathways are first to be impacted. 80% of the psychological and psychiatric morbidity of patients with cancer goes unrecognized and untreated Siemens Healthineers Insights Series · Issue 32 5 The solution Patient experience along the cancer pathway is much patient pathway, it is necessary to detect and measure more than just about the practicalities of the process. It psychological and emotional distress as early as possible. is about the emotional response to the early concerns, Collecting information about the stress of screening or magnified by the confirming diagnosis, leading to the diagnosis or the burden of treatment could be made by decision-making and process of treatment. Each step healthcare professionals skilled in experience and distress generates a range of emotions and stress, for the recognition; however this requires additional dedicated individual, the caregiver, and the healthcare clinician time. An alternative is for the process to be done professionals in contact with the patient at each specific digitally with intelligent systems and context analysis of, point along the pathway. for example, self-reported reviews. In the future it could even be enhanced by integrating the digital potential of Measurement of patient outcomes has progressed from wearables, diagnostic or treatment medical technology only measuring mortality to measuring a person’s interacting in real-time with the individual patient along functional ability. The Karnofsky Scale or the ECOG Scale the cancer pathway. Departments with a high level of (Eastern Cooperative Oncology Group)11, or patient- medical and digital technology such as radiology, reported outcome measurements (PROM) provide a oncology, and radiotherapy, or where patients have patient’s perspective on quality of life. However, in order frequent touchpoints throughout their pathway may play to create a holistic experience to reframe the cancer an important role in this regard. Early identification of emotions and distress Positive response Remission Primary report plan Screening invite Screening Cancer positive Specialist care screening report consultation consultation appointment to treatment Awaiting Awaiting Treatment Treatment Emotion Distress 6 Issue 32 · Siemens Healthineers Insights Series New ways to obtain information about How to analyze the information distress and anxiety with digital tools of distress and anxiety? In 2018, Siemens Healthineers and iWantGreatCare set Plutchik’s psychoevolutionary model of emotions served to out to explore the range of emotions experienced by aggregate the data. This model is used in affective patients (on breast and prostate cancer pathways), their analysis and identifies eight basic emotions (trust, joy, partners and families, and their care teams, with the aim fear, surprise, sadness, disgust, anger, anticipation) and to identify the type of intervention which might help secondary emotions e.g. optimism, submission, and mitigate distress along the cancer pathway. This aggressiveness. This model was used to consolidate exploratory study was conducted to specifically examine affective states, rate intensity, and map the corresponding the potential use of digital resources. Anonymized free basic emotion for each stage of the cancer pathway. text self-reported reviews of the healthcare service coupled with machine learning analysis were used to Common across both cancer types and particularly in the detect affective states and identify possible and actual initial stages of the pathways were: fear and apprehension, points for anxiety and emotional distress in the breast sadness alongside trust emerged shortly afterwards, clearly and prostate cancer pathways. Breast cancer produced a evident were anger and distraction. Serenity and vigilance total of 594 breast cancer reviews, clearly separated into appeared later in the various pathways. Overriding 134 reviews for breast screening, and 460 reviews for throughout the pathways, and according to Plutchik’s breast cancer diagnosis; for prostate the total number of secondary emotions, submission (trust and apprehension), compliant reviews was 110. It was a first pilot with the awe, disapproval, remorse and love (trust and acceptance) vision to assess emotional distress and anxiety along the were strong emotions felt by individuals, families, friends, cancer pathway and define critical points for the patient partners, and healthcare professionals. Optimism featured as experience.2 the lowest level of emotion, below aggression and contempt. Optimism Plutchik’s model This psycho-evolutionary model of emotions Acceptance can be used for aggregating and analyzing Interest Aggressiveness Serenity Love Joy data of affective states in combination with Anticipation Trust Ecstasy Submission distress analysis. Vigilance Admiration Annoyance Anger Rage Terror Fear Apprehension Loathing Amazement Contempt Grid Awe Disgust Surprise Sadness Boredom Distraction Disapproval Pensiveness Remorse Siemens Healthineers Insights Series · Issue 32 7 Furthermore, there is a high degree of alignment of Although a patient needs and gets a lot of information sentiment analysis with qualitative studies and exploratory along the pathway—provided by someone or proactively sessions with groups of patients. A Design Thinking gathered via digital media such as the internet—often it workshop was undertaken in the Center for Radiotherapy may be unrelated to the situation and inadequate to the in Freiburg (Zentrum für Strahlentherapie Freiburg) with individual situation, causing anxiety or reduced caution. patients in different stages of care to understand and Providing personalized information to the patient and optimize breast cancer patient needs during their entire family at a fitting moment in relation to the pathway and pathway.12 Various themes were confirmed and further via the correct medium is a factor to reduce distress. explained, for example, strain levels are high and vary throughout the pathway. The patients’ experience is In general, early detection of distress, negative affect, about both: a medical experience and a 24/7 private life. anxiety or possible depression and appropriate mitigation During the medical encounters, the patient feels passive, is critical in the cancer pathway: treatment outcomes can without freedom of choice and control versus private life, be compromised, loss of motivation for self-care, damage where there is a demand to be very proactive on self- social support, as well as, affect efficiency in healthcare care. This impacts the levels of strain and anxiety. systems. Key findings for breast and prostate cancer patients Factors in the clinical setting contributing Factors in the clinical setting contributing to positive affect (emotion): to negative affect (emotion): • Friendly, helpful and kind staff • Poor communication • Being put at ease by staff • Waiting times • Efficient service • Poor facilities • Professional attitudes • Insufficient information • Feeling anxious 8 Issue 32 · Siemens Healthineers Insights Series “Early detection of distress, negative affect, anxiety or possible depression and appropriate mitigation is critical in the cancer pathway.” Isabel Nieto Alvarez, MSc Senior Key Expert A benefit for transparency and efficiency The identification achieved in the breast and prostate Imagine cancer pathways of affective states aids the possible derivation points for anxiety and emotional distress. In the future, medical technology such as diagnostic imaging and radiotherapy For example, it may be possible to anticipate stress and CC equipment may provide additional anxiety for individuals related to the medical equipment, physiological measures for identification of before they face an unfriendly or intimidating diagnostic, stress, negative affective states and distress management. radiotherapy planning or treatment procedure. Early detection of distress or anxiety has been an important element of clinical practice for centuries. During face-to-face consultation, such detection has been relatively straightforward. During the pandemic, As the current paper proposes, it is increasingly feasible with much doctor-patient communication taking place to use digital methods, especially via self-reported free through digital channels and platforms, making these text analysis, data analysis and data modeling, to collect observations becomes more challenging. Connecting and identify anxiety and affective states. In the future, with patients empathetically, while being efficient and the potential offered by interaction with wearables, and establishing trust remains essential for clinicians, as medical technology such as diagnostic imaging and described in the Siemens Healthineers Insights paper radiotherapy equipment may provide additional “Strengthening patient trust”.13 However, picking up clues physiological measures for identification of stress, through digital consultations as to the patients’ level of negative affective states and distress management. anxiety, emotional distress, or if they are feeling overwhelmed requires a different approach. Siemens Healthineers Insights Series · Issue 32 9 A vision for the future Technological solutions could, in the future, help identify Imagine future intelligent early-stage stress and emotional burdens. Identifying + these burdens and anxieties as early as possible is systems essential, and digital tools -for example, wearables- can Intelligent systems could connect to nurses, make it much easier for caregivers to provide information or experts to aid with the non-clinical aspects of cancer, and personalizing to patients and monitor aspects such as physical exercise information for diverse populations, or mindfulness practice. Data gathered from patients can and for the appropriate moment in the also be integrated into subsequent treatment or diagnostic cancer pathway. appointments, providing a fuller picture of the patient’s activities, stress levels and emotions. Opportunities to better assist patients with the non-clinical aspects of cancer can also be enhanced through intelligent systems early in the respective cancer pathway can improve that improve access to nurses or other experts. These outcomes. Such a practice could be extended for the types of systems can lead to patients receiving more family, friends or partners, or even healthcare personalized decisions and advice at precisely the right professionals’ as part of the social support of the point along their own cancer pathway. individual. Once the activity profile is established, interconnection with medical equipment could provide a Although the need for face-to-face interaction with a more systematic delivery and monitoring of activity. The psychologist or psychiatrist will continue to be of great diagnostic and radiotherapy departments for example importance, the opportunity for digital-enabled solutions could integrate imaging and laboratory results on for people less severely affected would improve access to progression, observe both physical and mental progress this type of care. An important factor in moderating in the exercise programs along the care pathway, and stress, negative affect, depression and anxiety are any resulting changes to the receptivity of treatment. mindfulness and an early assessment of an individuals’ physical activity levels.14,15 In the future, it would be easy With the “Third Healthcare Revolution” the traditional to assign mindfulness groups to help cope with anxiety model of care, the old approach of referral from one and depression or provide training programs for professional to another, face-to-face communication relaxation techniques to be practiced during the stages between each healthcare provider and the person with of diagnosis or treatment. In the last five years there cancer is to be supplemented, complemented, and have been many systematic reviews on the benefits of enriched by digital means and innovative medical exercise for people with breast cancer, the knowledge technology—personalized and provided at the right needs to be put into practice. The benefits of tailored moment along the care pathway. exercise, prescribed by a health professional who specializes in the prescription and delivery of exercise, combined with appropriate support and encouragement 10 Issue 32 · Siemens Healthineers Insights Series “The latest healthcare revolution, propelled by three powerful drivers: citizens, knowledge, and technology including digitalization, is focused on extending healthy life expectancy and centered around physical and emotional well-being.” Sir Muir Gray, CBE, MD Executive Director of the Oxford Centre for Triple Value Healthcare Integrative management of stress, anxiety and the emotional burden Innovative future technologies may present opportunities interventions, as these moments are opportunities to to physically sense and identify early-stage stress and engage and help maintain progression and stability emotional burdens. Information could be integrated in along the entire pathway. the encounters a person has for diagnostic or treatment Well-being practices Tailored Digital physical psycho-social exercise support Personalized Helpful social treatment environment 11 Q C Siemens Healthineers Insights Series · Issue 32 11 Conclusion Emotionally accompanying the patients along their cancer pathway is a “must” in order to have a positive Emotionally accompany patients and effect on the recovery and enhance the overall efficiency families along the cancer pathway. of healthcare institutions. This paper has identified ways to make the emotional Improve early detection of emotional side of patients relevant as a separate module in the distress with innovative approaches e.g. recovery and treatment phases, and has proposed a first- digital resources and medical technology. of-its kind approach for early detection of emotional distress with digital resources and medical technology. Furthermore, this paper provides practical approaches to Implement integrated interventions to ease emotions in patients’ cancer pathway through the mitigate distress during diagnosis, + systematic application of integrative interventions to recovery and treatment phases of cancer. mitigate distress and consequently improving clinical and patient-reported outcomes, for example reported depression. Improve clinical and patient-reported outcomes. Whilst we continuously engage in finding cures and the means of prevention for cancer patients, the recent revolutionary advances in healthcare offer a huge S Enhance the overall efficiency of potential for improving not only survivorship and service healthcare institutions. satisfaction, but also the patients’ well-being. 12 Issue 32 · Siemens Healthineers Insights Series Suggested follow-up on siemens-healthineers.com/ insights/improving-patient-experience • Insights Series, issue 22: Strengthening patient trust: a priority for healthcare sustainability. Available at: siemens-healthineers.com/ insights/news/patient-trust-a-priority-for- healthcare-sustainability • Insights Series, issue 27: Reframing the patient experience. Available at: siemens-healthineers. com/insights/news/reframing-patient-experience • Insights Series, issue 28: Frictionless healthcare: Why it matters and how to get there. Available at: siemens-healthineers.com/insights/ news/frictionless-healthcare i Information: The Siemens Healthineers Insights Series is our preeminent thought leadership platform, drawing on the knowledge and experience of some of the world’s most respected healthcare leaders and innovators. It explores emerging issues and provides practical solutions to today’s most pressing healthcare challenges. All issues of the Insights Series can be found here: siemens-healthineers.com/insights/insights-series Contact: For further information on this topic, or to contact the authors directly: Christina Triantafyllou, PhD Vice President Head of Improving Patient Experience at Siemens Healthineers christina.triantafyllou@siemens-healthineers.com Siemens Healthineers Insights Series · Issue 32 13 About the authors Christina Triantafyllou, PhD Isabel Nieto Alvarez, MSc Vice President Head of Improving Senior Key Expert on Improving Patient Patient Experience at Siemens Healthineers Experience at Siemens Healthineers Christina Triantafyllou, Ph.D. is Siemens Healthineers’ Global Head of Isabel Nieto Alvarez, MSc. is passionate about innovating and Improving Patient Experience, where she explores ways in which this transforming the experience of care to be human centered. She is an field can be enhanced and made more accessible to healthcare expert of the Siemens Healthineers Global Innovation Network on providers. She develops strategic approaches to deliver high value mental and physical stressors in the experience of care. Isabel leads care, by providing patient experience focused solutions, best cross-functional teams in innovative projects on patient experience. practices and thought leadership content. Christina began her Prior to her current role, she has served as a marketing manager and healthcare career at Harvard Medical School, Boston, where she business developer for the company, and as Professor at the worked as a medical physicist developing imaging technology for the Universidad Anáhuac, México focused on sustainability in healthcare study of brain anatomy and function in disease. At Siemens Healthineers, for medical students and psychology. Passionate about improving she served as the Director of Global Ultra High Field MR Solutions, the patient and care team experience, she presents and writes focusing on business strategy, KOL-based collaborations in globally on the subject. She is a biomedical engineer from innovation/clinical translation, and product management for the first Universidad Iberoamericana in Mexico, holds a Master in Science on worldwide clinical 7T MR system. Christina holds a Ph.D. in Medical Mind and Body Medicine from Saybrook University in California, U.S. Physics from Kings College, University of London, UK. Prior to joining and Certifications on Leadership in Healthcare without Harm and Siemens Healthineers, she held appointments at Harvard Medical Design Thinking. Her scientific background on mind and body health School, and at Massachusetts Institute of Technology in Boston. and neuroscience, combined with experience in medical technology innovation are cornerstones of her expertise and passion. Sir Muir Gray, CBE, MD Executive Director of the Oxford Centre for Triple Value Healthcare, and a Director of Nick Rowley the Optimal Ageing Programme Consulting Director for iWantGreatCare Sir Muir Gray has worked in the Public Health Service in England Consulting Director for iWantGreatCare, a world leading independent since 1972. He is a physician and professor who has held senior platform for measuring patient experience, engagement and positions in screening, public health, information management, outcomes, with a dynamic online repository of over 6 million and value in healthcare. Muir Gray is now working with both NHS published healthcare reviews across 28 countries. Nick specialises in England and Public Health England to bring about a transformation the use of technology for the following sectors: IT, Telecom, of care with the aim of increasing value for both populations and Insurance, Education and Healthcare; both running businesses and individuals and provides oversight as Chief Knowledge Officer for leading teams, generating revenue and creating value for investors. iWantGreatCare. He has published a series of How To Handbooks for Nick also has experience in driving startups from idea to thriving example, How To Get Better Value Healthcare, How To Build business and strengthening an organisation’s portfolio by leading Healthcare Systems and How To Create the Right Healthcare Culture. innovation. His international experience being gained from working Muir’s work focuses on providing training to healthcare professionals for UK, US, Italian and Dutch companies. on value-based healthcare. He received a CBE in 2000 and was knighted in 2005 for services to the National Health Service. Sir Muir is an internationally renowned authority on healthcare systems and has advised governments of several countries outside the UK including Australia, New Zealand, Italy, Spain and Germany. 14 Issue 32 · Siemens Healthineers Insights Series References 1. Iacobucci G. Cancer backlog could take 6. Mausbach BT., Yeung P., Bos T., Irwin 11. Oken MM., Creech RH., Tormey DC., till 2033 to clear without more SA. Health care costs of depression in Horton J., Davis TE., McFadden ET., et consultants, says report. BMJ [Internet]. patients diagnosed with cancer. Psycho- al. Toxicity and response criteria of the 2021 Sep 24 [02/15/2022];374(2352). Oncology [Internet]. 2018 Jul 12 Eastern Cooperative Oncology Group. Available from: Cancer backlog could [02/15/2022];27(7):1735-1741. Am J Clin Oncol. 1982 Dec;5(6):649- take till 2033 to clear without more Available from: Health care costs of 655. 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Available (irishtimes.com) priority for healthcare sustainability. from: https://www.ncbi.nlm.nih.gov/ (siemens-healthineers.com) pmc/articles/PMC539654/. doi: 9. Thousands of overworked doctors plan 10.1258/jrsm.96.12.577 to leave the NHS, BMA finds [Internet]. 14. Academy of Medical Royal Colleges. UK: BMA; 2021 May 3. Available from: Exercise: The miracle cure and the role 5. Caruso R., GiuliaNanni M., Riba MB., Thousands of overworked doctors of the doctor in promoting it. 2015 Feb Sabato S., Grassi L., Depressive plan to leave the NHS, BMA finds - 13. [Internet]. Available from: Exercise - Spectrum Disorders in Cancer: BMA media centre - BMA the Miracle Cure - Academy of Medical Diagnostic Issues and Intervention. A Royal Colleges (aomrc.org.uk) Critical Review. Curr Psychiatry Rep 10. Reframing the patient experience. [Internet]. 2017 May 9 Insights series, issue 27: A new 15. Clinical Oncology Society of Australia. [02/15/2022];19(6):33. Available from: scorecard for healthcare leaders. 2021. COSA Position Statement on Exercise Depressive Spectrum Disorders in Available from: Reframing the Patient in Cancer Care. 2018 Apr. [Internet]. Cancer: Diagnostic Issues and Experience (siemens-healthineers.com) Available from: cosa-position- Intervention. A Critical Review (nih.gov). statement-v4-web-final.pdf doi: 10.1007/s11920-017-0785-7 Siemens Healthineers Insights Series · Issue 32 15 At Siemens Healthineers, we pioneer breakthroughs in healthcare. For everyone. Everywhere. By constantly bringing breakthrough innovations to market, we enable healthcare professionals to deliver high-quality care, leading to the best possible outcomes for patients. Our siemens-healthineers.com/ portfolio, spanning from in-vitro and in-vivo diagnostics insights-series to image-guided therapy and innovative cancer care, is crucial for clinical decision-making and treatment pathways. Did you enjoy the read? 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