Cancer Support Centre Research Articles

The benefits and barriers of accessing cancer support services

IntroductionCancer is a substantial cause of morbidity and mortality worldwide. In Ireland, rising cancer incidence means that the burden on society will continue to increase. Recent recognition of the large impact of psychological distress on patients with cancer has led to suggestions to use support centres to mitigate this distress. Thus, the benefits of participation and barriers to attendance must be explored. Aims & ObjectivesTo systematically review scientific literature and determine the: (i) Sociodemographic composition of cancer support centres. (ii) Benefits of support services to patients with cancer. (iii) Barriers/facilitators to support centre attendance. MethodsElectronic searches were carried out PubMed and the Cumulative Indexto Nursing and Allied Health Literature (CINHAL) databases using key words addressing the research question. Ten articles were selected and critically appraised. ResultsA summary of article results showed that while various groups remain underrepresented in support centres, new evidence suggests this may be changing. Increased support service attendance was linked to greater benefits. No change in anxiety or depression with attendance were seen. Barriers to attendance were identified. ConclusionsThe literature showed benefits to support services, but long term benefits must be further investigated. Future research quantitatively assessing benefits of support services, using validated assessment instruments are necessary. Psychological benefits of participation are still unclear. Validated questionnaires to assess the barriers to attendance must be developed. Lastly, there is a lack of studies on the benefits of and barriers to support services participation in the Irish population.

O10-3 Characteristics and support of cancer patients receiving financial counseling at a Cancer Counseling and Support Center

O10-3 Characteristics and support of cancer patients receiving financial counseling at a Cancer Counseling and Support Center

Analysis of the status and content of consultations with a Cancer Consultation and Support Centre during the COVID-19 pandemic.

Cancer Consultation and Support Centres (CCSCs) in Japan have been established at designated cancer hospitals nationwide and these centres provide information and consultation support for cancer care. The purpose of this study is to analyse the status and content of consultations during the COVID-19 pandemic using consultation record data from the Cancer Consultation Support Centre (CCSC) database from January 2020 to March 2021. First, we examined the number and percentage of cases involving and not involving COVID-19 and compared the items of the entry forms between the groups. The comparison between the two groups suggests that the traditional consultation items used before the COVID-19 pandemic did not adequately cover the consultation content during the COVID-19 pandemic. Therefore, we categorised the content of consultation records related to COVID-19. As a result, the content was consolidated into 16 categories, which were appropriately captured from five different aspects. Using the resulting categories, we were able to create a complementary consultation entry form that could be operational during the COVID epidemic and consult consultants for the support they needed. Not applicable.

Implementation of patient navigation program: Experience in Cipto Mangunkusumo Hospital as one of the first pilot projects in Indonesia.

104 Background: Successful cancer treatment depends on many factors, not merely only medical aspects, but also other things, such as patients’ ability to comply the treatment schedule, patients’ understanding of the treatment steps and process, to avoid delay in administrative process, etc. These non-medical aspects are significantly affects patients ability to complete the treatment, especially in developing country including Indonesia. This study aims to empower a group of patient navigator (PN) in a Radiation Oncology Unit in one of the biggest national top referral hospital in Indonesia, Cipto Mangunkusumo Hospital. Methods: For the preparation of the project, 14 lay patient navigators and 1 physical navigator who were all cancer survivors nor volunteer from the Cancer Information and Support Center (CISC) Group, were trained for basic patient navigation training and basic cancer knowledge, as well as communication skills training. The navigators also trained for emergency response (basic life support, hospital emergency codes and responses, etc). This program is under supervision of the American Cancer Society (ACS). As for the flow of the process, all new cancer patients in the Department will be introduced to PN for screening of their non-medical aspects potential barriers using a self-made questionnaire. Fourteen risk potential problems are listed in the questionnaires, including accommodation, transportation, financial, psycho-social and family/support system problems. Results: The program was launched in September 2022 in the Department of Radiation Oncology Cipto Mangunkusumo Hospital. Patients with all cancer types are included in the program. Until Feb 2023, more than 500 patients have been screened for their potential barriers in going through the treatment. Most of the significant helps given by the PN were allocating a free accommodation for the patients living far from the hospital, free transportation pick up to the hospital, home visits for those who drop outs from treatment and give the supports needed to come back to therapy, and psychosocial-emotional supports. Conclusions: Patient navigation program in our Department was found to be effective in helping our cancer patients completing their treatment.

Abstract P4-07-58: Adjuvant Endocrine Therapy adherence in Breast Cancer patients and the Brazilian National Health System

Abstract Introduction: Breast Cancer is one of the most prevalent malignant disease in women and its first line neo- and/or adjuvant treatment on hormone positive (HR+) subtypes is the endocrine therapy. Even though Adjuvant Endocrine Therapy (AET) had significantly increased overall survival in the long-run, some studies have reported suboptimal treatment adherence rates, varying from 40-95.7%. One possible cause for this great variability on AET adherence is the patients’ expenses on treatment. Recent studies have demonstrated that as the cost of treatment increases the treatment adherence decreases. Nonetheless, as far as the authors have searched, no studies have tried to understand such relationship in Brazil, where medications can be taken without any out-of-pocket expenses through the Sistema Único de Saúde (SUS), or through Health insurance companies; and through direct out-of-pocket expenses. Methods: This was an observational cross-sectional pilot study, carried out with an online questionnaire applied to patients from the Centro de Tratamento Oncológico Pro Onco [Pro Onco Oncological Treatment Center] and Centro de Apoio ao Paciente com Câncer de Londrina [Londrina Cancer Support Center] (State of Paraná, Brazil). The questionnaire applied in this study included objective questions that aimed to understand the systemic endocrine therapy adherence among Breast Cancer patients. In order to do that, the Morisky-Green (MG) test was used. A linear regression model was built using the MG test as dependent variable, and how the patients obtained the drugs as independent variable, controlled by other sociodemographic and clinical covariates. Results: Between December 2021 and March 2022, 95 patients were included in this study. Mean age was 50.71 (SD = 10.00) and mean age at diagnosis was 45.86 (SD = 8.66). Patients obtained the drugs mainly via Health Insurance (45 patients or 47.37%), followed by the SUS (44 patients or 46.32%) and private health expenses (6 patients or 6.32%). It was found that how the patient obtained the medication was statistically significant in predicting adherence. Patients that obtained the medication via the SUS had poorer adherence compared to those that obtained the medication via Health Insurance (coeff.=-0.38 [-0.68;-0.09]; p-value = 0.010) and via Private Health Expenses (coeff.=-0.81 [-1.42;-0.21]; p-value = 0.008). It was also found that considering all three main options available to obtain the medication, 30 patients (68.18%) that obtained the medication via the SUS had already forgotten to take the medication once; whereas only 18 patients (40%) that obtained the medication via Health Insurance had done (Chi-Square = 7.1116; p-value = 0.008). Besides that, it was found that only 22 patients (50%) that obtained the medication via the SUS knew the type of cancer they had. Considering only patients that obtained the medication via Health Insurance, 35 patients (77.78%) knew the type of cancer they had (Chi-Square = 7.4546; p-value = 0.006). Conclusion: The results of this study do not match the literature on the topic, and it could be explained by a poorer doctor-patient relationship at SUS as non-clarification on the importance of adjuvant treatment can be related to a poorer adherence. Citation Format: ANA CRISTINA HERRERA, Caio C. Kasai, Eduarda T. Gonçalves, Liemi A. Homa, Carlos Eduardo E. de Oliveira. Adjuvant Endocrine Therapy adherence in Breast Cancer patients and the Brazilian National Health System [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P4-07-58.

Prioritising the content and delivery of a work-focused intervention for women with breast cancer using the nominal group technique.

Increased breast cancer survivorship has prompted a focus on optimising quality of life for this cohort, including reintegration into employment. Despite this, there remains a lack of work-focused interventions to support work outcomes for women living with and beyond breast cancer. The aim of this study was to prioritise the content and delivery of a work-focused intervention for women living with and beyond breast cancer. Twelve stakeholders including women living with and beyond breast cancer, healthcare professionals, cancer support centre staff, and policy informers were invited to participate in an online discussion using the Nominal Group Technique (NGT) to determine priorities for a work-focused intervention. The NGT seeks consensus through four steps; (i) idea generation, (ii) discussion among the group, (iii) refining ideas, and (iv) ranking preference for ideas through anonymised voting. Intervention content prioritised included managing cancer-related symptoms and work-specific factors. Consensus was made for a blended delivery format (mix of group and individual sessions), and blended delivery (face-to-face and online). Findings indicated a preference for a six-week intervention, with 90-120 minute sessions. Community-based settings were preferred over hospital-based services for the setting of a work-focused intervention. Zoom Video Communications Inc. was the preferred setting to deliver an online intervention. Stakeholder priorities informed the content and delivery of a work-focused intervention for women with breast cancer. A pilot of the proposed intervention will be conducted to test for feasibility and acceptability.

The experiences and perceptions of female breast cancer patients regarding weight management during and after treatment for oestrogen-receptor positive disease: a qualitative study

BackgroundWeight gain is commonly observed during and after breast cancer treatment and is associated with poorer survival outcomes, notably in women with oestrogen-receptor positive disease. The aim of this qualitative study was to investigate the experiences and perceptions of oestrogen-receptor positive (ER +) female breast cancer patients (BCPs) regarding weight management behaviours during and after treatment. Secondly, to gain insight into the experiences of healthcare professionals (HCPs) regarding the provision of weight management advice to patients undergoing treatment.MethodsFour focus groups involving 16 BCPs having a median (range) age of 51 (35–70 y) and three focus groups involving 21 HCPs aged 46 (29–62) were held at a university campus, local cancer support centre or clinical site. Data were analysed using Framework analysis.ResultsFour overarching themes (and 10 subthemes) were identified: (1) Treatment; (2) Support for lifestyle behaviour change; (3) Information availability for BCPs; (4) Knowledge of current evidence amongst HCPs. The physical and psychological consequences of treatment influenced motivation for weight management amongst BCPs. Social support for health promoting behaviours was viewed as important but was conflicting, requiring context-specific considerations. BCPs said they would have welcomed access to credible information (guided by HCPs) about the potential detrimental health effects of excess body weight and weight gain, together with advice on weight management via healthy eating and physical activity. HCPs felt that they had insufficient knowledge of public health dietary and physical activity recommendations or evidence-based interventions to confidently offer such advice. HCPs expressed concern that raising weight management issues would exacerbate distress or invoke feelings of guilt amongst BCPs, and cited time pressures on patient consultations as additional barriers to providing weight management support.ConclusionThe study yielded novel insights into factors influencing weight management behaviours amongst overweight ER + BCPs. The results suggest that evidence-based information and support, which addresses key physical and psychological challenges to physical activity and dietary behaviours, offers the best route to sustainable weight management in this population.

The Wessex Fit-4-Cancer Surgery Trial (WesFit): a protocol for a factorial-design, pragmatic randomised-controlled trial investigating the effects of a multi-modal prehabilitation programme in patients undergoing elective major intra–cavity cancer surgery

Background: Surgical resection remains the primary curative treatment for intra-cavity cancer. Low physical fitness and psychological factors such as depression are predictive of post–operative morbidity, mortality and length of hospital stay. Prolonged post-operative morbidity is associated with persistently elevated risk of premature death. We aim to investigate whether a structured, responsive exercise training programme, a psychological support programme or combined exercise and psychological support, delivered between treatment decision and major intra-cavity surgery for cancer, can reduce length of hospital stay, compared with standard care. Methods: WesFit is a pragmatic , 2x2 factorial-design, multi-centre, randomised-controlled trial, with planned recruitment of N=1560. Participants will be randomised to one of four groups. Group 1 (control) will receive usual pre-operative care, Group 2 (exercise) patients will undergo 2/3 aerobic, high-intensity interval training sessions per week supervised by personal trainers. Group 3 (psychological support) patients are offered 1 session per week at a local cancer support centre. Group 4 will receive both exercise and psychological support. All patients undergo baseline and pre-operative cardiopulmonary exercise testing, complete self-report questionnaires and will be followed up at 30 days, 12 weeks and 12 months post-operatively. Primary outcome is post-operative length-of-stay. Secondary outcomes include disability-adjusted survival at 1-year postoperatively, post-operative morbidity, and health-related quality of life. Exploratory investigations include objectively measured changes in physical fitness assessed by cardiopulmonary exercise test, disease-free and overall mortality at 1-year postoperatively, longer-term physical activity behaviour change, pre-operative radiological tumour regression, pathological tumour regression, pre and post-operative body composition analysis, health economics analysis and nutritional characterisation and its relationship to post-operative outcome. Conclusions: The WesFit trial will be a randomised controlled study investigating whether a high-intensity exercise training programme +/- psychological intervention results in improvements in clinical and patient reported outcomes in patients undergoing major inter-cavity resection of cancer. ClinicalTrials.gov registration: NCT03509428 (26/04/2018)

Nutrition support and intervention preferences of cancer survivors.

Ascertaining cancer survivors' specific needs and preferences regarding nutrition information delivery is important in developing and designing future health interventions in oncology. The present study aimed to explore the nutrition information needs of cancer survivors and their preferences regarding intervention delivery. The present study is a mixed-methods study comprising a cross-sectional survey and focus groups. Participants were eligible for inclusion if they were aged ≥ 18 years, living in Ireland with a cancer diagnosis and had completed treatment at least 6 months previously. Cancer support centres promoted the online survey on social media. Focus groups were conducted with 20 individuals. The cohort (n = 56) was predominantly female (n = 50; 89.3%) breast cancer survivors (n = 42; 75%). Seven (12.5%) had received nutrition advice from a dietitian. Most were interested in receiving nutrition advice (n = 52; 92.9%), with variability in delivery mode. There was interest in improving sleep quality (n = 35; 62.5%), making positive lifestyle changes (n = 28; 50%) and accessing cancer-specific physical activity classes (n = 27; 48.2%). The best time to deliver information was throughout the cancer journey (n = 31; 55.4%). Time and motivation (n = 15; 26.8%) were the main barriers. Facilitators were keeping healthy (n = 42; 75%) and weight maintenance (n = 31; 55.4%). Four themes emerged from thematic analysis: lack of nutrition guidance, an abundance of misinformation, one size does not fit all and dietitians as the preferred source of advice. There is a desire for evidence-based nutrition advice and for dietitians to be integrated into cancer clinics and cancer survivorship care. This research guides future nutrition interventions to improve cancer survivorship outcomes.

The Experiences of Touch Therapies in Symptom Management of Rural and Regional Cancer Patients in Australia.

IntroductionCancer patients are increasingly combining touch therapies (e.g., remedial massage, lymphatic massage, and/or reflexology) with conventional treatments to deal with the impact of their cancer and treatments on their physical and mental well-being. To understand the impact of integrative oncology services on cancer patients, it is essential to explore the impact that various types of integrative oncology services have on cancer patients.AimsThis paper presents cancer patients’ experiences with touch therapies in a community-based cancer support center and to identify opportunities for better access to these practices and service provision in Australia.MethodsA random selection of cancer patients (n=36) receiving touch therapies at a rural/regional community cancer center completed mixed-methods mail surveys regarding the use of touch therapies, their satisfaction, and the impact on pain, fatigue, nausea and overall well-being.ResultsFindings indicated that these services helped manage both physical and emotional symptoms. Of the participants experiencing pain and fatigue, findings revealed that touch therapies assisted with pain in 90% of participants and with fatigue in 70%.ConclusionGiven the increased and continued use of touch therapies by individuals with cancer, cancer centers should consider establishing touch therapy services or provide referrals to touch therapy services that can assist with symptom management and improve quality care. By more clearly understanding the benefits of the different types of integrative oncology interventions, patients with cancer receive more tailored and effective interventions throughout of their cancer journey.

Development of a Systematic Approach to Consultation Record Data from Cancer Consultation and Support Centers.

The purpose of this study is to extract features and structure them using text mining and to analyze changes over time on consultation records accumulated in a cancer consultation and support center database from 2009 to 2018. The text-mining approach worked effectively under conditions of expanding data, and a co-occurrence network revealed patterns and trends in the content of consultations.

Associations between self-efficacy, distress and anxiety in cancer patient-relative dyads visiting psychosocial cancer support services: Using actor-partner interdependence modelling.

Patients with cancer and their relatives often suffer from psychosocial burdens following a cancer diagnosis. Psychosocial cancer support services offer support for cancer patients and their relatives. Only a few studies have focused on associations of psychological factors within patient-relative dyads. This study aims to assess associations between the patients' or relatives' self-efficacy and their levels of distress and anxiety who seek help together at psychosocial cancer support centres. Participants were recruited at two psychosocial cancer support centres in a major city in Germany. Patients with cancer and their relatives seeking support together received the questionnaire before their first support session. Self-efficacy was assessed with the Pearlin sense of mastery scale, distress with the distress thermometer and anxiety with the General Anxiety Disorder questionnaire (GAD-7). For the analysis, the actor-partner interdependence model was applied. The data analysis was based on 41 patient-relative dyads (patients: 39% women, mean age 53.5; relatives: 66% women, mean age 52.16). A significant actor effect from self-efficacy to distress was found for patients (r = -0.47) but not for relatives (r = -0.15). Partner effects from self-efficacy to distress were not significant (r = -0.03, r = -0.001). The actor effect from self-efficacy to anxiety for patients (r = -0.61) as well as relatives was significant (r = -0.62), whereas the partner effect was significant for patients (r = 0.16) but not for relatives (r = -0.46). The results suggest that patients' and relatives' self-efficacy is associated with their distress and anxiety. Partner effects were visible for patients' self-efficacy and relatives' anxiety. These findings suggest that self-efficacy is an important factor for the psychological well-being of patients and relatives and that it may additionally be associated with the partners' well-being. Longitudinal research with larger samples is needed to support the findings.

Prevalence vs impact: a mixed methods study of survivorship issues in colorectal cancer

PurposeThis study aims to explore the prevalence of CRC survivorship issues and their impact on survivors’ quality of life (QoL).MethodsThis study utilised a mixed methods sequential explanatory design. Adult CRC survivors between 6- and 60-months post-diagnosis (n = 304) were purposively recruited from three hospitals and twenty-one cancer support centres in Ireland. QoL was evaluated using the EuroQol and FACT-C questionnaires and results compared to population norms. 22 survey participants took part in semi-structured interviews exploring the impact of survivorship issues on their daily lives.ResultsWhile CRC survivors reported QoL outcomes comparable to or better than normative populations, 54% were dissatisfied with their QoL. The most common survivorship issues reported included negative body image (74%), fatigue (68%), sexual dysfunction (66%) and sleep disturbance (59%). Thematic analysis of the qualitative data illustrated survivors’ attempts to live with the impact of cancer and its treatment (loss, fear, impact) and striving to contextualise, reframe and understand the consequences of cancer and its treatment (control, vigilance, benefit). Within these themes, the cross-domain impact of less prevalent symptoms including bowel dysfunction (28–57%) and peripheral neuropathy (47%) were widely discussed.ConclusionsAlthough cancer survivors report positive QoL outcomes, many experience distressing physical, psychological and social effects. The findings suggest less common and difficult to manage symptoms are the greatest source of distress and unmet need. Support and information must be tailored to address survivors’ individual needs and preferences for support, informed by holistic person-centred assessment.

がんサポートセンター内に設置された ゲノム医療連携室によるがんゲノムプロファイリング 検査保険適用に際しての課題解決の試み

がんサポートセンター内に設置された ゲノム医療連携室によるがんゲノムプロファイリング 検査保険適用に際しての課題解決の試み

An Analysis of Patterns and Trends in Consultation Records from Cancer Consultation and Support Center by Applying Text Mining

An Analysis of Patterns and Trends in Consultation Records from Cancer Consultation and Support Center by Applying Text Mining

Analysis of Annual Changes and Trends in Contents of Consultations at a Cancer Counseling and Support Center

Analysis of Annual Changes and Trends in Contents of Consultations at a Cancer Counseling and Support Center

O uso da prática espiritual no tratamento da dor de pessoas com câncer

Objetivo: Identificar se os pacientes com câncer utilizam a prática espiritual no enfrentamento da dor fí­sica causada pelo câncer e quais são as estratégias espirituais utilizadas. Método: Trata-se de estudo transversal e descritivo, realizado em um hospital de referência em tratamento quimioterápico e uma casa de apoio a pessoas com câncer, localizados no sul da Bahia, entre agosto e setembro de 2019. Para a coleta foi utilizado um questionário com variáveis sociodemográficas e perguntas acerca da espiritualidade. Resultados: A maioria das pessoas realizavam estratégias espirituais: oração, leitura da bí­blia, ir í missa/culto, hinos de louvor, acender velas, rezar o terço, meditação e ter fé nos médicos e em Deus. Conclusão: O uso da prática espiritual é uma estratégia utilizada pelas pessoas com câncer que participaram do estudo para o alí­vio da dor fí­sica causada pela doença, e que tal estratégia reduz a dor.

Evaluating a centralised cancer support centre in the remote region of Northern Norway.

Being diagnosed with cancer and undergoing treatment is a life-changing experience, and many cancer patients find the physical, emotional and social effects of the disease to be stressful. This study explores the experiences of cancer patients and their relatives from all parts of Northern Norway visiting the centralised cancer support centre. In a comprehensive prospective survey, 286 visitors were invited to participate and 181 of these accepted. The characteristics of the participants, their expectations for visiting the centre, whether they wanted to meet peers or volunteers rather than clinicians and how they viewed the centre in the context of cancer care were evaluated. Most satisfied were visitors aged less than 50 years, women and those reporting a 'strong social network'. The majority of the visitors wanted to have better access to peers (with a similar cancer diagnosis) (89%), cancer nurses (75%) or oncologists (71%). About a third of the participants (29.8%) lived in communities with fewer than 5000 inhabitants and 59.4% in municipalities with fewer than 15 inhabitants/km2. There were no significant differences in the characteristics of the participants, or in their evaluation of the support centre, when stratified by number of inhabitants or population density in their home community. The cancer support centre was highly valued by patients and their relatives for meeting peers. The centre was most frequently visited by and most popular among women and those self-reporting strong social networks. Access to oncology doctors and nurses in this setting could be valuable. Participants living in remote areas had similar characteristics and evaluated the support centre similarly to those living in more urban areas.

Analysis of Expert System Lung Disease Diagnosis System of Web-Based Disease in Cihaur Puskesmas

One of the causes of death in humans is lung disease, namely cancer. Data from the Indonesian Cancer Information & Support Center (CISC) shows lung cancer is the number one cancer killer with a total of 14 percent of cancer deaths. The death rate due to lung cancer in Indonesia even reaches 88%. That must be considered to be one of human efforts in maintaining health in the lungs. Handling that can be done is to check early to be able to avoid or treat the lung disease. The existence of an expert system provides a solution to overcome this. Expert system is a computer system that stores knowledge, facts, reasoning and experience from an expert that is used to solve problems in a particular field, especially for lung disease. The purpose of this research is to design an expert system of web-based lung disease diagnosis that can help the public to carry out consultations about lung disease anywhere without having to come directly to the hospital or puskesmas/clinic. The method used is descriptive method and action. In designing the expert system, the method used is the method of object-oriented approach and prototype development method. With this expert system, it will be easier for the public to obtain information about lung disease, help the public and doctors to diagnose lung disease, and help doctors supervise the treatment of patients and the public.

Experiences of involvement processes during participation in cancer service user initiatives from an adolescent and young adult perspective.

Service user participation contributes to the improvement of health care services for the betterment of conditions experienced by patients. However, there is a lack of knowledge about how adolescents and young adults (AYAs) experience involvement processes in practice and what it would take to achieve a high degree of involvement according to AYAs. To explore: (1) how AYAs with cancer experienced involvement processes during participation in three different service user involvement initiatives (development of an app, development of a book and youth panel meetings), and (2) AYAs' perceptions of determination and collaborative areas between AYAs and professionals. Individual semi-structured interviews were conducted with 12 AYAs with cancer aged 16-29 who had participated in at least one of the service user initiatives in Kræftværket, a youth cancer support centre and social organisation located at Copenhagen University Hospital, Denmark. We analysed data with thematic analysis. We identified three main themes with matching sub-themes: Working procedures (Agenda setting, Workflow, Dialogue), Knowledge sharing (AYAs' needs and ideas, Areas of expertise), Influence (Decisions, Ownership). Generally, the participants experienced an equal dialogue with professionals and felt they had the final say on decisions. This study produced specific suggestions on how to involve AYAs to a high extent. Based on AYAs' own perceptions of involvement, AYAs', professionals' and shared determination areas were illuminated. Additionally, the AYAs highlighted how the professionals gave feedback during co-creation processes, which may inspire future service user involvement projects.