Health-Related Quality of Life in Danish Cancer Survivors Referred to a Late Effects Clinic: A Prospective Cohort Study.

PURPOSE: The Region of Southern Denmark has recently established four late effects clinics to help cancer survivors suffering from complex and severe late effects. This study aimed to capture and analyze the full range of physical, mental, and psychosocial issues using patient-reported outcomes. Moreover, we aimed to describe demographic data and the type and severity of the late effects. METHODS: A prospective cohort study was conducted among cancer survivors referred to a late effects clinic. Before their first appointment, patients completed the European Organization for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire (EORTC QLQ-SURV100). We compared mean scores of the EORTC QLQ-SURV100 scales that were comparable to the scales/items from the EORTC QLQ-C30 questionnaire with norm data for the Danish population and EORTC reference values. RESULTS: All patients referred to the clinic within its first 2 years were included (n = 247). The mean age was 57 [23-85] years and 74% were females. The most common cancer diagnoses was breast cancer (39%). The five most commonly reported late effects were fatigue (66%), pain (51%), cognitive impairment (53%), sleep problems (42%), and neuropathy (40%). A total of 236 of the patients entering the clinic completed QLQ-SURV100. They reported significantly worse mean scores on all scales compared to the Danish norm population and EORTC reference values for pretreatment cancer patients, p < 0.001. Effect sizes were moderate or large for all scales. INTERPRETATION: In this study, we collected demographic data and described the late effects presented by the patents referred to the clinic. Moreover, we captured and analyzed the full range of physical, mental, and psychosocial issues using QLQ-SURV100. Patients referred to the Late Effects Clinic (LEC) had a number of late effects and reported a significantly lower health-related quality of life compared to the general Danish population and patients who have just been diagnosed with cancer, suggesting the aim of helping patients suffering from late effects gain a better quality of life is in dire need.

Treatment and Rehabilitation for Esophageal Cancer-Striving to Meet Obstacles and Long-term Impacts: A Qualitative Descriptive Study.

BACKGROUND: Following esophagogastric cancer treatment, patients with esophageal cancer and their relatives struggle with adjusting to a new everyday life as they experience various challenges after treatment requiring rehabilitation. Health professionals must address long-term impacts on patients' health, everyday life, family functioning, and support needs. OBJECTIVE: This qualitative descriptive study aimed to explore patients', relatives', and health professionals' experience with long-term impacts and rehabilitation after treatment for esophageal cancer. METHODS: A qualitative approach based on a phenomenological-hermeneutical methodology was used. Two methods were selected in the study: focus group interviews with health professionals and individual interviews with patients and relatives. Inductive thematic analysis with inspiration from Braun and Clarke was used for data analysis. RESULTS: Three main themes emerged from the data analysis: (1) forced into limitations in everyday life, (2) learning and navigating a new everyday life, and (3) rehabilitation accepting new normality. CONCLUSION: Patients and relatives experience persistent long-term impacts after treatment for esophageal cancer, making rehabilitation strenuous and demanding. Relatives take considerable responsibility for the patients' rehabilitation but feel invisible and unsupported by health professionals. Health professionals acknowledge the severity of long-term impacts but fail to prepare patients and relatives for the impacts and do not see the relatives' need for support. IMPLICATIONS FOR PRACTICE: The study emphasizes the need for a proactive approach in the healthcare system, addressing patients' and relatives' physical and psychological vulnerability. Cancer nurses need to prepare and involve patients and relatives in treatment, long-term impacts, and rehabilitation.

Employment status among cancer survivors in a Late Effects Clinic in Denmark.

PURPOSE: This study aims to investigate changes in employment status among disease-free working-age cancer survivors (CSs) with late effects from diagnosis to their first meeting in the Late Effects Clinic (LEC) and investigate associated patient-reported outcomes of reduced employment status. METHODS: Retrospective analysis of a cohort of CSs followed in a LEC at a single institution from January, 2022, to March, 2023. Working-age CSs with no current evidence of active cancer were included in this study. CSs completed a baseline questionnaire (EORTC QLQ-SURV100) before their initial consultation. Reduced employment status was defined as transition from being in paid work at diagnosis to working fewer hours or not at all at the first visit. Multivariate linear regression analysis was used. RESULTS: A total of 119 CSs with diverse cancer types with a mean age of 51 years (range 26 to 70) were included in this study. Eighty percent were female. Of 93 CSs in paid work at diagnosis, 66 (71%) have reduced employment status. Reduced employment status was associated with lower role functioning score (ß = -12.3, p = 0.046), higher loss of income score (ß = 35.1, p = 0.001), and lower Global health status score (ß = - 8.3, p = 0.05). CONCLUSIONS: This study shows that the majority of CSs seen in the LEC have reduced employment status. This is associated with impaired quality of life. IMPLICATIONS FOR CANCER SURVIVORS: Identifying and treating late effects early in cancer survivorship are important to secure CSs' labour market attachment and, thus, their financial and social well-being.

Using video consultations for clinical assessment and decision of treatment readiness before chemotherapy: A mixed-methods study among patients with gastrointestinal cancer and oncology nurses.

Objective: To investigate the feasibility of clinical assessment and decision of treatment readiness before chemotherapy using video consultations, as perceived by gastrointestinal cancer patients and oncology nurses. In addition, to estimate reductions in travel time for patients and environmental carbon dioxide (CO2) emissions. Methods: In a mixed-method study, patients with gastrointestinal cancer who participated in at least one video consultation during April-October 2019 completed a questionnaire on socioeconomic status, time and kilometers saved on travel. Kilometers saved were converted into reduced CO2 emissions. Descriptive statistics were used for analysis. Patients (n = 15) participated in semi-structured individual interviews, and five oncology nurses participated in a focus group interview. Results: A total of 84/119 patients (71%) consented to video consultation and responded to the questionnaire. 69% were male, with a mean age of 66 years. For 46% of patients, a video consultation saved more than an hour of travel time. Avoiding a median travel distance of 120 km per patient (range, 2-450 km) reduced CO2 emissions by 7018 lb. Video consultations had other positive effects on patients, including avoiding waiting rooms, having more energy, and experiencing more focused interactions with nurses. Technical issues occurred rarely. Nurses found technical issues more troublesome, sometimes precluding complete assessments. They reported a need to rethink nursing practice to effectively provide care during video consultations. Conclusions: Video consultations reduced CO2 emissions. In addition, they were beneficial for patients with gastrointestinal cancer. However, providing an optimal clinical assessment and decision of treatment readiness before chemotherapy requires testing patient equipment, technical skills and new oncology nursing competencies.

Transition from masters of nursing to clinical practice.

INTRODUCTION: Research indicates that nurses with a Master's degree can contribute to an increasing quality of care, thereby improving care pathways in hospitals. In 2014, the Master's programme in Nursing at the University of Southern Denmark was established to create a relationship between the university and clinical practice to improve nurses' ability to function at a higher clinical level. Therefore, this study aimed to explore the significance of the Master's degree on nurses' self-perceived competencies and their return to clinical practice. DESIGN AND METHODS: A longitudinal qualitative design was used with six focus groups including graduates from the Master's programme in Nursing. The study was conducted in two phases: The first phase in 2017 (n = 16) investigated how the Master's degree affected the graduates' self-perceived competences and their working life. The second phase in 2021-2022 (n = 10) was a follow-up and included a subset of the participants from the first phase. Data were analysed with an inductive approach inspired by Malterud's systematic text condensation. RESULTS: The analysis revealed two main categories: Transition to Practice and The Impact of the Master's Degree, along with five underlying sub-categories. CONCLUSION: Graduates perceived themselves as better nurses because of the Master's degree. The Master's programme in Nursing enhanced their competencies enabling them to provide more qualified and evidence-based nursing for the benefit of clinical practice. The transition and the conditions under which the graduates were employed, such as the ward culture and the ward management, had a significant impact on how they experienced their return to clinical practice.

Determinants of poor quality of life in older patients with cancer: A longitudinal mixed methods study (PROGNOSIS-Q).

INTRODUCTION: Patient-reported outcomes are becoming more employed in oncologic research because many older patients with cancer prioritize preserved health-related quality of life (HRQoL) over prolonged survival. However, few studies have examined the determinants of poor HRQoL in older patients with cancer. This study aims to determine whether HRQoL findings are truly reflective of cancer disease and treatment, as opposed to external factors. MATERIALS AND METHODS: This longitudinal, mixed-methods study included outpatients, age 70 years or more, with a solid cancer, who reported poor HRQoL (EORTC QLQ-C30 Global health status/QoL (GHS) score ≤ 33.3), at treatment initiation. A convergent design was employed, in which HRQoL survey data and telephone interview data was collected in parallel at baseline and three-months follow-up. Survey and interview data was analyzed separately and subsequently compared. Thematic analysis of interview data was conducted according to Braun & Clarke, and changes in patients GHS score were calculated using mixed model regression. RESULTS: Twenty-one patients with a mean age of 74.7 years were included (12 men and 9 women) and data saturation was achieved at both time intervals. Baseline interviews (n = 21) showed that poor HRQoL at cancer treatment initiation was primarily reflective of participants' initial shock upon receiving their cancer diagnosis and their change in circumstance and sudden functional independence. At three months, three participants were lost to follow-up and two provided only partial data. Most participants experienced an increase in HRQoL, with 60% showing a clinically significant improvement in GHS scores. Interviews showed that this was due to lessening functional dependency and disease acceptance achieved by mental and physical adjustment. HRQoL measures were less reflective of cancer disease and treatment in older patients with preexisting highly disabling comorbidity. DISCUSSION: This study showed good alignment between survey responses and in-depth interviews, demonstrating that both methodologies are highly relevant measures during oncologic treatment. However, for patients with severe comorbidity, HRQoL findings are often more reflective of the steady state of their disabling comorbidity. Response shift may play a part in how participants adjusted to their new circumstances. Promoting caregiver involvement from the time of diagnosis may increase patients´ coping strategies.

Patient-reported outcome (PRO) measurements in chronic and malignant diseases: ten years' experience with PRO-algorithm-based patient-clinician interaction (telePRO) in AmbuFlex.

BACKGROUND: Patient-reported Outcome (PRO) measures may be used as the basis for out-patient follow-up instead of fixed appointments. The patients attend follow-up from home by filling in questionnaires developed for that specific aim and patient group (telePRO). The questionnaires are handled in real time by a specific algorithm, which assigns an outcome color reflecting clinical need. The specific questionnaires and algorithms (named solutions) are constructed in a consensus process with clinicians. We aimed to describe AmbuFlex' telePRO solutions and the algorithm outcomes and variation between patient groups, and to discuss possible applications and challenges. METHODS: TelePRO solutions with more than 100 processed questionnaires were included in the analysis. Data were retrieved together with data from national registers. Characteristics of patients, questionnaires and outcomes were tabulated for each solution. Graphs were constructed depicting the overall and within-patient distribution of algorithm outcomes for each solution. RESULTS: From 2011 to 2021, 29 specific telePRO solutions were implemented within 24 different ICD-10 groups. A total of 42,015 patients were referred and answered 171,268 questionnaires. An existing applicable instrument with cut-off values was available for four solutions, whereas items were selected or developed ad hoc for the other solutions. Mean age ranged from 10.7 (Pain in children) to 73.3 years (chronic kidney disease). Mortality among referred patients varied between 0 (obesity, asthma, endometriosis and pain in children) and 528 per 1000 patient years (Lung cancer). There was substantial variation in algorithm outcome across patient groups while different solutions within the same patient group varied little. DISCUSSION: TelePRO can be applied in diseases where PRO can reflect clinical status and needs. Questionnaires and algorithms should be adapted for the specific patient groups and clinical aims. When PRO is used as replacement for clinical contact, special carefulness should be observed with respect to patient safety.

Patient-reported outcomes for monitoring symptomatic toxicities in cancer patients treated with immune-checkpoint inhibitors: A Delphi study.

BACKGROUND: Immune-related adverse events (IrAEs) associated with the use of immune checkpoint inhibitors (ICIs) may not be fully covered by existing measures like the PRO-CTCAE™. Selecting PRO-CTCAE™ items for monitoring symptomatic adverse events is hindered by the heterogeneity and complexity of IrAEs, and no standardised selection process exists. We aimed to reach expert consensus on the PRO-CTCAE™ symptom terms relevant for cancer patients receiving ICIs and to gather preliminary expert opinions about additional symptom terms reflecting ICI symptomatic toxicities. Additionally, we gathered expert consensus about a core set of priority symptom terms for prospective surveillance and monitoring. DESIGN: This Delphi study involved an international panel of experts (n = 6 physicians; n = 3 nurses, n = 1 psychiatrist and n = 1 patient advocates). Experts prioritised the relevance and importance of symptom terms to monitor in patients treated with ICIs. RESULTS: Experts reached a consensus on the relevance of all (n = 80) PRO-CTCAE™ Symptom Terms. Consensus on the importance of these symptom terms for prospective monitoring in patients receiving ICIs was reached for 81% (n = 65) of these terms. Additional symptoms terms (n = 56) were identified, with a consensus that 84% (47/56) of these additional symptom terms should also be considered when monitoring symptomatic IrAEs. CONCLUSION: This study identified a prioritised list of symptom terms for prospective surveillance for symptomatic IrAEs in patients receiving ICI treatment. Our results indicate the need to strengthen the validity of PRO measures used to monitor patients receiving ICIs. While these results provided some support for the content validity of the PRO CTCAE™ and resulted in a preliminary set of salient symptomatic adverse events related to the use of ICIs, broader international agreement and patient involvement are needed to further validate our initial findings.

The cost of living with cancer during the second wave of COVID-19: A mixed methods study of Danish cancer patients' perspectives.

PURPOSE: This study investigated experiences and levels of distress and resilience of Danish cancer patients during the second wave of the COVID-19 pandemic. METHODS: The mixed methods design included a subset of cancer patients who responded to a cross-sectional survey in May 2020. Data were collected through telephone interviews. The National Comprehensive Cancer Network Distress Thermometer (NCCN DT), and Connor-Davidson-Resilience Scale (CD-RISC2) were used to measure distress and resilience. Data were analysed by thematic analysis and descriptive statistics. RESULTS: Forty patients with lung, breast, colorectal and skin (melanoma) cancer were included; 65% were women. Mean age was 62.2 years (standard deviation [SD], 13.2). Most patients had curable disease (65%); 50% were in treatment and 50% in post-treatment follow up. The interviews revealed four themes: 1) the cost of living with cancer during COVID-19, 2) changes in cancer care delivery, 3) particularly vulnerable, and 4) importance of family support. Mean NCCN DT score was 2.3 (SD, 2.6) while the mean CD-RISC2 score was 7.25 (SD, 1.1). CONCLUSION: Despite drastic changes in daily life imposed by COVID-19 restrictions, Danish cancer patients had remarkably low levels of distress and high levels of resilience. Patients in active treatment, with comorbidities or elderly felt vulnerable. Family support was invaluable in critical times.