Assessment Of Cancer Patients Research Articles

Studying the accessibility of healthcare services for cancer patients in Khartoum state amid the COVID-19 pandemic

ObjectivesThis study aims to assess cancer patients' accessibility to healthcare services and perceived barriers during the COVID-19 pandemic in Khartoum state, aiming to explore the consequent impact on cancer patients. It also aims to determine the coping strategies used by patients to overcome these barriers. Study designThis is a retrospective analytical cross-sectional study. MethodsData were collected from August 2020 to March 2021, with a sample size of 316 cancer patients. Systemic random sampling and SPSS version 25 were utilized for data collection and analysis. ResultsThe study found that 55.7 % of the surveyed cancer patients had experienced disruptions in accessing essential cancer healthcare services during the lockdown. The study identified the most common cancers as breast (19.7 %), gastrointestinal (19 %), and ovarian (11 %). Notable barriers included governmental travel restrictions (51.6 %), outpatient service closures (41.8 %), and high costs (27.8 %). Additionally, delayed treatment was directly associated with a 33.3 % fatality rate among the participants. ConclusionsThis study highlights the considerable negative impact of the COVID-19 lockdown on cancer care in Sudan. Recommendations include a focus on telemedicine as an alternative form of patient consultation, the expansion of health insurance schemes to encompass cancer treatments, and strengthening healthcare infrastructure to facilitate cancer care during crises.

Knowledge about, attitudes toward and acceptance and predictors of intention to receive the mpox vaccine among cancer patients in China: A cross-sectional survey

ABSTRACT This study aimed to investigate the knowledge about, attitudes toward, and acceptance and predictors of receiving the mpox vaccine among Chinese cancer patients. Patients were selected using a convenience sampling method. A web-based self-report questionnaire was developed to assess cancer patients’ knowledge, attitudes, and acceptance regarding the mpox vaccine. Multivariate logistic regression analysis was used to determine predictors of acceptance of the mpox vaccine. A total of 805 cancer patients were included in this study, with a vaccine hesitancy rate of 27.08%. Approximately 66% of the patients’ information about mpox and the vaccine came from the mass media, and there was a significant bias in the hesitant group’s knowledge about mpox and the vaccine. Multivariable logistic regression analysis suggested that retirement; chemotherapy; the belief that the mpox vaccine could prevent disease, that vaccination should be compulsory when appropriate and that the mpox vaccine prevents mpox and reduces complications; the willingness to pay for the mpox vaccine; the willingness to recommend that friends and family receive the mpox vaccine; and the belief that the mpox vaccine should be distributed fairly and equitably were factors that promoted vaccination. The belief that mpox worsens tumor prognosis was a driving factor for vaccine hesitancy. This study investigated the knowledge of cancer patients about mpox and the vaccine, evaluated the acceptance and hesitancy rates of the mpox vaccine and examined the predictors of vaccination intention. We suggest that the government scientifically promote the vaccine and develop policies such as free vaccination and personalized vaccination to increase the awareness and acceptance rate of the mpox vaccine.

EORTC QLQ-C30 normative data for the United Kingdom: Results of a cross-sectional survey of the general population

ObjectiveThe cancer-specific health-related quality of life (HRQoL) questionnaire of the European Organisation for Research and Treatment of Cancer (EORTC), the EORTC QLQ-C30, is a frequently applied questionnaire to assess cancer patients’ self-reported health used as part of research and clinical practice. Normative data obtained from the general population can facilitate the interpretation of these data. Despite its frequent application, no detailed EORTC QLQ-C30 normative data have yet been published for the United Kingdom (UK). This study presents detailed EORTC QLQ-C30 normative data for the United Kingdom overall and by sex and age. MethodsThe data are drawn from a larger published, international, cross-sectional online survey. For the recruitment, the sample was stratified by sex (males, females) and age in five age groups with a sample size of n = 100 per subgroup. ResultsA total of N = 1026 UK respondents completed the survey (n = 517 females, n = 509 males). There were no clear subgroup patterns by sex or age; however, older patients tended to show higher (i.e., better) scores in emotional and social functioning; they also reported some of the lowest (i.e., best) scores for symptoms, such as insomnia, appetite loss, diarrhoea, nausea/vomiting or financial difficulties. ConclusionThis paper provides EORTC QLQ-C30 general population normative data for the UK, further stratified by sex and age. These data will greatly support the interpretation of EORTC QLQ-C30 scale scores obtained from UK cancer patients, and also enable comparison with other detailed national normative datasets collected in the same project, across several other European countries and the US.

Development of a structured questionnaire to assess cancer patients’ individual needs in general practice. A qualitative study

BackgroundPresent studies report a vast number of unmet rehabilitation needs for cancer patients and a lack of professional focus irrespective of the type of cancer, prognosis, treatment, and clinical setting. Therefore, interventions targeting individual needs assessments using patient-reported outcome measures are recommended. AimThis paper explores the perceived value of a primarily author-developed questionnaire that assesses the needs experienced by cancer patients and general practitioners in their interaction in general practice. MethodsWe conducted nine semi-structured qualitative interviews with nine general practitioners and nine cancer patients to evaluate their assessment of our 33-item questionnaire. ResultsThe general practitioners and patients demonstrate similarities but differences in their perception of the questionnaire’s value. The general practitioners were anxious about the questionnaire's comprehensiveness, which could indicate to the patients that they should solve all their problems related to the aftermaths of their illness. This is why the alignment of expectations was essential to the general practitioners. The comprehensiveness was, however, also regarded as instructive to the general practitioners, given that they would get more knowledge about the patient’s conditions and problems. The patients saw the questionnaire as a helpful tool that could aid them in their illness, by targeting highly relevant areas that were not always addressed by their general practitioner. The comprehensiveness was thus regarded as helpful. They hoped the general practitioners would allocate enough time to go through all their needs, provided the general practitioners received the filled-in questionnaire before the consultations. ConclusionThe GPs and patients favored the comprehensiveness of an author-developed structured questionnaire. Both groups agreed that it addressed all issues relevant to the patients during their illness. Although the GPs stressed that expectations should be aligned before introducing the questionnaire to the patients at consultations.

Instruments for assessing the spiritual needs of cancer patients: A systematic review of psychometric properties.

To identify available instruments for assessing cancer patients' spiritual needs and to examine their psychometric properties using the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology. Cancer patients frequently have significant spiritual needs. The nurse plays an integral role in assessing the patient's spiritual needs as part of providing holistic care. It is crucial to assess these needs using appropriate and reliable instruments. A systematic review based on COSMIN methodology. Seven electronic databases (PubMed, EMBASE, CINAHL, Web of Science, ProQuest, CNKI and WANFANG) were systematically searched from inception until 14 February 2023. Two authors independently screened eligible literature, extracted data and evaluated methodological and psychometric quality. This systematic review was conducted following the PRISMA checklist. Sixteen studies have reported 16 different versions of the instruments. None of the instruments were properly assessed for all psychometric properties, nor were measurement error, responsiveness and cross-cultural validity/measurement invariance reported. All of the instruments failed to meet the COSMIN quality criteria for content validity. The quality of evidence for structural validity and/or internal consistency in five instruments did not meet the COSMIN criteria. Eventually, five instruments were not recommended, and 11 were only weakly recommended. Instruments to assess spiritual needs exhibited limited reliability and validity. The Spiritual Care Needs Scale is provisionally recommended for research and clinical settings, but its limitations regarding content validity and cross-cultural application must be considered in practice. Future research should further revise the content of available instruments and comprehensively and correctly test their psychometric properties. The review findings will provide evidence for healthcare professionals to select instruments for recognising spiritual needs in cancer patients. This study is a systematic review with no patient or public participation.

Factors associated with palliative care symptoms in cancer patients in Palestine

Palliative care is critical to redundancy in cancer patients seeking to improve their quality of life. Evaluation should be incorporated into clinical practice routines at all stages of cancer. The Edmonton Symptom Assessment System (ESAS) was used to rate the intensity of ten symptom evaluations designed and validated for cancer patients in various languages and cultures. Therefore, the study aims to assess the symptoms reported using ESAS scores to identify patients who would benefit from palliative care that can improve the integration of palliative care into standard cancer care at An-Najah National University Hospital (NNUH). A cross-sectional study was selected for 271 cancer patients using a convenience sampling method at NNUH. Demographic, clinical, and lifestyle characteristics are described. Furthermore, patients' moderate to severe symptoms (score > 4) were obtained using ESAS-R. The survey consisted of 271 patients, with a response rate of 95%. The average age of the patients was 47 ± 17.7 years, ranging from 18 to 84 years. The male-to-female ratio was approximately 1:1, 59.4% of the patients were outpatients, and 153 (56.5%) had hematologic malignancies. Fatigue (62.7%) and drowsiness (61.6%) were the most common moderate to severe symptoms in ESAS. Furthermore, pain (54.6%), nausea (40.2%), lack of appetite (55.0%), shortness of breath (28.5%), depression (40.6%), anxiety (47.2%) and poor well-being (56.5%) were reported. In conclusion, fatigue and drowsiness were the most reported symptoms according to the ESAS scale among cancer patients, while moderate to severe symptoms were reported in cancer patients using the ESAS. The ESAS is a functional tool for assessing cancer patients' symptoms and establishing palliative care services.

Combined early palliative care for non-small-cell lung cancer patients: a randomized controlled trial in Chongqing, China.

More effective approaches are needed to improve the prognosis of non-small-cell lung cancer (NSCLC) patients. Thus, we used the E-warm model to assess how early integration of interdisciplinary palliative care was related to the quality of life (QoL), psychological functioning, pain management, and nutrition factors of NSCLC patients. This randomized controlled trial enrolled 280 newly diagnosed NSCLC patients, which were randomly divided (1:1) into combined early palliative care (CEPC) and standard oncological care (SC) groups. At baseline and after 24 weeks, the Functional Assessment of Cancer Therapy-Lung (FACT-L) scale, Hospital Anxiety and Depression Scale (HADS), and the Patient Health Questionnaire-9 (PHQ-9) were used to assess QoL and psychological function, respectively. The Numerical Rating Scale (NRS) and Patient-Generated Subjective Global Assessment (PG-SGA) were used to assess cancer patients' pain and nutrition levels. The primary outcome was overall survival (OS). Secondary outcomes comprised changes in the QoL, psychological functioning, pain, and nutrition state. The intention-to-treat method was applied for analysis. This study was registered at www.chictr.org.cn (ChiCTR2200062617). Of the 140 patients enrolled in the CEPC and SC groups, 102 and 82 completed the research. The CEPC group presented higher QoL than the SC group (p < 0.05). Additionally, fewer patients presented depressive symptoms in the CEPC group than in the SC group (p < 0.05), as well as better nutritional status (p = 0.007) and pain management (p = 0.003). Compared to the SC group, CEPC patients had significantly longer OS (20.4 vs. 24.6 months, p = 0.042; HR: 0.19; 95% CI: 0.04-0.85, p = 0.029). With combined early palliative care, NSCLC patients lived longer, had better QoL, were psychologically stable, were in less pain, and were more nutritionally satisfied.

Telephone consultation for cancer survivors with unclarified need for rehabilitation in a primary healthcare setting: a mixed methods process evaluation

Purpose To evaluate the implementation of telephone consultations to assess cancer patients’ needs for rehabilitation, with focus on patients’ acceptance, health professionals’ experience and contextual factors. Methods A mixed methods process evaluation was conducted at a primary healthcare rehabilitation clinic. Cancer survivors above 18 years of age with an unclarified rehabilitation need at discharge from hospital, was offered a telephone consultation provided by health professionals. Data on implementation and acceptability were collected using medical records systems, data collection forms and semi-structured interviews with six patients and two health professionals. Results Eighty-one cancer survivors were referred to the intervention, and 54% continued to further rehabilitation. The telephone consultations were executed approximately eight days after referral and took on average 44 min to deliver. Overall, the patients found that the telephone consultation addressed what they considered the most important topics, and the health professionals found the intervention to be acceptable. Both patients and health professionals reported challenges regarding the referral process. Conclusion Patient acceptance of the intervention was high, and the telephone consultation was implemented to a high degree, resulting in more than half of the patients continuing to further rehabilitation. Patients’ and health professionals’ perspectives provided valuable insights about contextual factors.

Radiotherapy service amidst COVID-19: Experience from Tertiary Referral Hospital in Semarang, Indonesia.

Several changes in hospital policies took place to mitigate the spread of Coronavirus disease 2019 (COVID-19). However, the patient's perception to these abrupt changes in medical services is not known. This study analyzed the quality of radiotherapy service during the COVID-19 pandemic and the patient's perception of them. This descriptive study will qualitatively assess cancer patient perception of the quality of radiotherapy service during COVID-19 pandemic. Willing participants were given a questionnaire that explore two major aspects: the patient's general knowledge of COVID-19 and their perception of radiotherapy service during the pandemic. The 145 participants of this study were generally well-informed about the significance of COVID-19 pandemic. Most respondents claimed to adequately practice preventive measures and put high regards in personal protective equipment (PPE) worn by them and healthcare workers for their safety. Their level of trust to all healthcare workers remained high and identified hospital announcements (television, brochures) educated them the most in regards to the relationship of COVID-19 and cancer. The changes in hospital policies and radiation oncology service in our institution were well-received by the study population. Despite the majority of respondents were afraid and anxious of being infected of COVID-19 while undergoing treatment, only a minority of them contemplated to delay or completely stop going for treatment. By adhering to major guidelines and adjustments of local resources, the delivery of radiotherapy service can remain consistent during the pandemic.

Social Distress among Cancer Patients: Differential Effects of Risk Factors and Attenuating Role of Culturally Specific Social Support.

Introduction: We investigated the association between social distress or toxicity and patients' clinical conditions, demographic characteristics, and social support and networks, and whether this association differs along the distribution of patients' distress levels. This study included 156 patients treated at King Abdulaziz Medical City, Riyadh, Saudi Arabia. Methods: We used the previously validated Social Toxicity Assessment Tool in Cancer (STAT-C) to assess cancer patients' distress. We analyzed distress level, the outcome variable of interest, and covariates to show distribution and identify associations. We then used logistic quantile regression for bounded outcomes to assess the association between social distress or toxicity and patients' clinical conditions, demographic characteristics, and social support and network. As an extension, we examined the interaction between disease status and social support, focusing on the moderating role of social support in attenuating the impact of disease status on social distress. Results: The median age of the patients was 51.2 (SD = 21.4, range 22 to 89), with 48.1% being older than 50 years. Of the 156 cancer patients analyzed, 82 (52.6%) were classified as burdened, and 50% of those with uncontrolled disease status were socially distressed. However, there were more socially distressed patients diagnosed within a year and patients undergoing treatment. There was a greater number of patients who shared their diagnosis with family, colleagues, and neighbors with social distress. The odds of suffering from social distress were higher in younger patients (50 years or younger) than in older patients. Social distress was lower in patients who underwent combined chemotherapy, surgery, and radiation compared with patients who received a single treatment regimen (OR = 0.65, CI, -0.820 to -0.036, p = 0.033). The odds of social distress were 67% higher in patients diagnosed within one year than in patients diagnosed more than one year prior (OR = 1.664, CI, 0.100-0.918, p = 0.015). Patients with uncontrolled disease conditions who shared their diagnosis and treatment with social networks were 48% less likely to experience social distress. Thus, sharing cancer diagnoses with social networks has a statistically significant moderating effect by attenuating the impact of disease status on social distress. Conclusion: Understanding the risk factors for social distress may be important for cancer management. Additionally, identifying the moderating role that patients' sharing of cancer diagnoses in social networks plays in attenuating the impact of disease status on social distress may provide healthcare providers with valuable insights for holistic culture-specific care.

Phase I study of A166, an antibody‒drug conjugate in advanced HER2-expressing solid tumours

In this phase I study, the safety, pharmacokinetics, and antitumour activity of the HER2-targeted antibody–drug conjugate A166 were evaluated in patients with HER2-expressing advanced solid tumours. Patients with advanced solid tumours refractory to standard therapies received A166 at doses of 0.1, 0.3, 0.6, 1.2, 2.4, 3.6, 4.8 or 6.0 mg/kg Q3W in a standard “3 + 3” design. Dose cohorts were expanded at 4.8 and 6.0 mg/kg Q3W. Primary endpoints were assessment of the safety and tolerability of A166 and identification of the maximum tolerated dose or recommended phase II dose. In total, 81 patients were enroled and received A166 (n = 1 for 0.1 mg/kg; n = 3 for each of 0.3, 0.6, 1.2, 2.4 and 3.6 mg/kg doses; n = 27 for 4.8 mg/kg; n = 38 for 6.0 mg/kg). No dose-limiting toxicity or drug-related deaths occurred. The most common treatment-related adverse events at grade 3 or higher were corneal epitheliopathy (30.9%), blurred vision (18.5%), dry eyes (7.4%), and peripheral sensory neuropathy (6.2%). The Cmax and area under the curve of Duo-5, its free payload, were approximately 0.1% and 0.2% of those of the ADC, respectively. For all assessable HER2-positive breast cancer patients enroled in the 4.8 mg/kg and 6.0 mg/kg cohorts, the corresponding ORRs were 73.9% (17/23) and 68.6% (24/35), respectively, and the median PFS was 12.3 and 9.4 months, respectively. A166 has a recommended phase II dose of 4.8 mg/kg Q3W, manageable toxicity, good stability in the circulation and promising antitumour activities in HER2-positive breast cancer patients.

Development and preliminary validation of Cancer-related Psychological Flexibility Questionnaire

The Cancer-related Psychological Flexibility Questionnaire (CPFQ) was developed and validated for assessing cancer patients' psychological flexibility, including attitudes and behavior toward cancer. In a systematic process, the CPFQ identified four factors through principal component analysis and confirmatory factor analysis: Cancer Acceptance, Cancer Avoidance, Activity Engagement, and Valued Action. The results of this study reveal that the CPFQ has a clear factor structure and good psychometric properties. The specific nature of cancer and the need for a specific measure of cancer patient psychological flexibility make this questionnaire valuable for research on psychological flexibility in cancer patients.

The Effectiveness of Sarcopenia Interventions for Cancer Patients Receiving Chemotherapy: A Systematic Review and Meta-analysis.

Among people with cancer undergoing chemotherapy, generalized loss of muscle mass, termed secondary sarcopenia , is associated with treatment toxicities and physical disability. This systematic review and meta-analysis aimed to provide an overview of current interventions for sarcopenia in cancer patients receiving chemotherapy and to assess potentially effective interventions. We searched PubMed, Scopus, CINAHL (Cumulative Index to Nursing and Allied Health Literature) Plus, and EMBASE for primary original research of exercise and nutrition interventions for sarcopenia published in English. The review used PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) guidelines. Standardized mean difference and 95% confidence interval (CI) were calculated as effect measures by applying the random-effects model. The 6 included studies showed a trend toward significantly increasing skeletal muscle mass after intervention (mean difference, 0.168; 95% CI, -0.015 to 0.352; P = .072), with no significant changes in lean body mass loss after intervention (mean difference, -0.014; 95% CI, -1.291 to 1.264; P = .983). Resistance exercise and combined exercise and nutrition intervention were more effective at preserving or increasing muscle mass. Early implementation of a resistance exercise intervention or a combined exercise and nutrition intervention is a promising strategy for avoiding muscle mass loss during chemotherapy. Additional evidence-based assessments of interventions for secondary sarcopenia are needed to identify the most effective approach. In clinical practice, oncology nurses should frequently assess cancer patients' muscle mass and when warranted should implement the most feasible early sarcopenia intervention to minimize the adverse outcomes of this condition.

Lessons learned about policymaking: Moving an emergency department-initiated screening protocol to systemwide input in the development and implementation process.

Lessons learned about policymaking: Moving an emergency department-initiated screening protocol to systemwide input in the development and implementation process.

Effect of depression, anxiety, and distress screeners on the need, intention, and utilization of psychosocial support services among cancer patients

PurposeIn clinical cancer care, distress screening is recommended to identify highly burdened patients in objective need for psychosocial support to improve psychological distress and quality of life and to enhance patient empowerment. It is however unclear whether distress screeners are suitable for psychosocial care planning and thus whether they can predict the willingness that is need, intention, and utilization, to seek psychosocial support.MethodsIn a secondary analysis of a cluster intervention study, we assessed cancer patients with three distress screeners (DT, PHQ-9, GAD-7) at baseline. The willingness to seek psychosocial support services was assessed binary for psychosocial services at 3 and 6 months. Logistic regression models were applied to examine the predictive effect of the screeners on need, intention, and utilization. We corrected all models for multiple testing.ResultsThe 660 patients included in the study were on average 60 years, 54% were male. At the 3- and 6-month follow-up, 353 and 259 patients participated, respectively. The screeners were best in predicting the need for support (OR reaching up to 1.15, 1.20, and 1.22 for the PHQ-9, GAD-7, and DT respectively). The intention was predicted by the PHQ-9 and GAD-7, whereas utilization of psychosocial support services was not predicted by the screeners.ConclusionThe three distress screeners might be useful in psychosocial care planning, as they are able to predict the need and to some degree the intention to seek psychosocial support. Future research needs to examine potential barriers and supporting factors that may explain utilization of psychosocial support.Trial registrationThe study was retrospectively registered (2/2021) at ClinicalTrials.gov (number: NCT04749056).

Racial disparities in diabetes prevalence among cancer patients.

Cancer inequity is one of the most critical public health issues faced by ethnic minorities and people of lower socioeconomic status. The disparate burden of cancer is caused by poor access to care and inadequate delivery of cancer treatment, as well as comorbid and co-occurring conditions. Diabetes is a common and serious comorbid condition of cancer. To better understand diabetes prevalence among diverse cancer patients, this study analyzed and described characteristics of cancer patients with diabetes from local-level Service Planning Area (SPA) data using City of Hope Comprehensive Cancer Center data, and United States national-level data from The National Health Interview Survey. Findings from national level data showed that patients in racial/ethnic minority groups had a higher occurrence of being diagnosed with diabetes, especially for non-Hispanic Blacks (OR=1.76, 95% CI=1.51, 2.03) and Hispanic/Latino individuals (OR=1.34, 95% CI=1.18, 1.52). Cancer patients who are older, ethnic minority, overweight/obese and with lower educational levels were more likely to have co-occurring diabetes. SPA-level patient data found similar results. In response to our findings and other reports, clinicians and health system including health coverage organizations should routinely assess cancer patients for cooccurring chronic illnesses, in particular diabetes. Interventions improving coordinated care that integrates oncology, endocrinology and primary care, targeting cancer patients --especially racial/ethnic minorities, overweight/obese, and older patients who are at increased risk for diabetes -- ought to be considered as best practice Whole Person care. With coordinated care management, ethnic disparities in cancer may be better addressed and reduced. Additionally, policymakers can contribute by enacting policies improving access to and coverage of integrated oncology, chronic disease prevention, and associated specialty care i.e., endocrinology to equalize quality care for ethnic minority, lower educated, overweight/obese and older cancer patients who are more likely to suffer greater comorbidity, and inadequate oncology and coordinated care to reduce disparities.

Validation of the Readiness for End-of-Life Conversations (REOLC) scale in a German hospital setting.

For every health behavior, readiness to engage is a necessary and crucial foundation for following conversations, interventions or behavior changes. The present study aims to support a one-factor structure for the Readiness for End-of-Life Conversations (REOLC) scale (Berlin et al., 2021) in a population of cancer patients (N = 295). For validation purposes, data of patients participating in a screening development study at a university clinic was used. Model adequacy was analyzed with structural equation modelling and controlled for with goodness of fit indices: χ2-test, SRMR, rRMSEA. Discriminant and convergent validity were assessed with correlations of REOLC and psychological or health behavior measures. Factor structure was supported with good fit indices, discriminant validity and convergent validity. Readiness correlated significantly with age and reported death anxiety. The REOLC scale is a reliable instrument to assess cancer patients' readiness for end-of-life conversations. Future studies may further address moderating and mediating effects of socio-demographic, medical and psychological factors. The assessment of readiness may further indicate anxiety levels of cancer patients and enables practitioners to provide interventions accordingly. However, in a clinical setting and especially for patients with a palliative prognosis, end-of-life care conversations may need to be introduced early.

Validation of the Thai Version of the Memorial Symptom Assessment Scaled - Short Form Among Cholangiocarcinoma Patients.

The Memorial Symptom Assessment Scale-Short Form (MSAS-SF), a standard instrument for assessing cancer patients' symptoms, has been validated in numerous languages. However, it has not been validated in Thai. The purpose of this study was to translate the MSAS-SF into Thai and determine its psychometric properties in Cholangiocarcinoma (CCA) patients. The MSAS-SF was translated into Thai, and 231 CCA patients completed the questionnaires, which included baseline characteristics, T-MSAS-SF, Functional Assessment of Cancer Therapy-Hepatobiliary (FACT-Hep), and the Hospital Anxiety and Depression Scale (HADS). Cronbach's alpha coefficient was used to assess reliability for internal consistency. For convergent validity, Pearson's correlation coefficient was used to calculate the relationship between the T-MSAS-SF and the T-CaSUN, HADS, and FACT-Hep subscales. Subscale and total T-MSAS-SF internal consistency reliability was moderately high, with Cronbach alpha coefficients ranging from 0.76 to 0.87. For convergent validity, the majority of T-MSAS-SF scores had moderate to low inverse correlation with FACT-Hep, HADS T-CaSUN subscales with the correlation coefficients-0.10 to -0.68 (p<0.05), reflecting that they were measuring a similar construct. Our findings showed that the T-MSAS-SF has acceptable validity and reliability to assess the psychometric properties of early to advance stage CCA patients during treatment and early post-treatment stage.

A nationwide, prospective collection of patient reported outcomes in the Cancer Registry of Norway

Background: The Cancer Registry of Norway (CRN) has collected data on all Norwegian cancer patients from health providers since 1952. To assess cancer patients’ self-reported late effects and health related quality of life(HRQoL) after treatment, the CRN started collecting data on Patient Reported Outcomes (PROs) in 2020. Objectives: To present the infrastructure for the CRN’s national health survey collection of PROs and describe some experiences of the first two years of data collection. Methods: In 2021, the CRN invited patients newly diagnosed with prostate cancer, breast cancer, colorectal cancer, or malignant melanoma to participate in the three-year digital health survey “Population survey on health and quality of life”. Patients were invited at least 21 days after diagnosis and within 150 days of the diagnosis. A control group consisting of individuals with no history of the cancer in question was randomly drawn from the National Population Register. Descriptive statistics regarding invitations and participation are presented. Results: A total of 15 641 patients and 15 187 individuals in the control group were identified as eligible for participation in 2021. A total of 12 297 (82%) of the patients and 11 534 (76%) of the controls used one or more of the digital solutions the CRN used to distribute the surveys and received an invitation to the survey. Overall, 6 091 (47%) of the patients and 3 718 (32%) of the controls participated, with variation across the cancer types. Discussion: Self-reported late effects and HRQoL after contemporary cancer treatments can be studied among participants in these nationwide longitudinal surveys which continuously include newly diagnosed patients. The response rates at baseline are still somewhat low and vary between 41% and 51% among the cancer patients. Selection bias may be a challenge, as half of (or less) than the individuals invited in 2021, chose to participate. Conclusions: The infrastructure for a national, prospective survey collection of PROs is in place and in use. The CRN plans to analyse the representativeness and validity of the PROs data. The goals are to include PROs in surveys covering all the clinical registries at the CRN, and that the PROs collected by the CRN can be used in research and quality improvement of the health services offered to cancer patients.

CN58 Mapping the measurement of lymphoma survivors’ unmet needs and quality of life outcomes: Evidence for a lymphoma-specific questionnaire

A pressing issue for cancer survivorship is the availability of care and resources for survivors. The assessment of survivors’ needs has advanced efforts to improve this. Evidence relating to lymphoma-specific cancer survivors and the measurement of their needs and quality of life outcomes is limited. While various instruments assessing cancer patients' needs and quality of life are available, finding the most relevant, lymphoma-specific and psychometrically rigorous instruments is needed to ensure that future care is responsive to survivors’ needs.