The impact of childhood cancer on the family: a qualitative analysis of strains, resources, and coping behaviors

Clinical research has led to tremendous improvements in treatment efficacy for most childhood cancers; overall 5-year survival is now greater than 75%. Long-term consequences of cure (i.e. adverse medical and psychosocial effects) have only recently begun to emerge as a primary focus of clinical research, including studies of health-related quality of life among survivors. Usually lacking in such efforts, however, is consideration of the impact of the cancer experience on the family, and the influence that the family's response to cancer has on quality of life in the child. From this qualitative analysis of seven focus groups with 45 parents of children a year or more out of cancer treatment, we report those aspects of a child's cancer diagnosis, treatment, and recovery that parents perceived as particularly difficult for their family, and the resources and coping behaviors parents perceived as helpful to their family in dealing with and managing the cancer experience. Using the Family Adjustment and Adaptation Response theoretical model to organize the data, the domains of strains and resources were delineated into themes and sub-themes related to the cancer, child, family, health-care system, and community. Within a third domain, coping, sub-themes were identified within the themes of appraisal-focused, problem-focused, and emotion-focused coping behaviors. Integration of this information should serve to improve future studies of health-related quality of life among children who survive cancer.     

A qualitative analysis of social concerns of women with ovarian cancer

A diagnosis of ovarian cancer requires a woman to reevaluate her interactions with family, friends, and employers, and cope with unexpected and unwanted changes in areas spanning from financial stability to sexuality and fertility. Social well-being is the aspect of a patient's overall quality of life that encompasses these topics, as it has evolved to represent activities related to roles and relationships at work and at home. The purpose of this study was to explore the social well-being of women with ovarian cancer to better define their needs for the health care community. Data consisted of all correspondence (n = 21,806) sent to 'Conversations!: The newsletter for those fighting ovarian cancer' by women with ovarian cancer from 1994 to 2000. Using ethnographic, qualitative research methods, statements related to the impact of disease were bracketed and coded within physical, psychological, social, and spiritual domains according to the City of Hope Quality of Life Ovarian Cancer Instrument. Comments reflecting social well-being were categorized in sub-themes and reviewed for content. Statements related to social support were most common (n = 251) reflecting the need for support from family, friends, and other women with ovarian cancer. Distress regarding the genetic association of the disease comprised a major theme (n = 73). Family relationships were also discussed (n = 146) in light of the stress of changing roles and relationships at home. Issues related to employment and returning to work (n = 74) focused on both the difficulties in taking time off work to receive treat-ment and sense of achievement felt upon returning to work and regaining normalcy. The themes identified in this study challenge healthcare professionals to provide increased disease-specific support, as well as concomitant sup-port for husbands/partners and children of patients. Additional information on genetic testing and counseling for women at-risk due to a family history of ovarian cancer is also needed.     

Cultural,Religious and Socio-Ethical Misconceptions among Muslim Women towards Breast Cancer Screening: A Systematic Review

Introduction: Breast cancer is the most diagnosed cancer worldwide. With an estimated 685,000 deaths, female breast cancer was the fifth leading cause of cancer mortality worldwide, accounting for 6.9% of all cancer deaths. Previous studies have shown that late detection and delayed diagnosis are associated with advanced-stage breast cancer and poor survival. Factors contributing to non-adherence to breast cancer screening among women were elicited from previous studies. However, few studies have focused on the Muslim community, particularly Muslim women. As such, this systematic review aims to fill this gap by collecting information from studies conducted globally over the past ten years that examined cultural, religious and socio-ethical misconceptions about breast cancer screening among Muslim women. Methods: Following the PRISMA guidelines, literature searches were conducted systematically through various databases including PubMed, Science Direct, Scopus, Cochrane Library and Oxford Academic Journals. Article identification, screening steps and eligibility measures were meticulously performed throughout the review. Results: A total of 22 papers were appraised and included in this review. Five main themes were generated which were socio-ethical misconceptions, cultural and religious beliefs, cultural and religious barriers, stigmatization and fear of breast cancer impact. Eight sub-themes and 14 sub sub-themes were further elicited from the main themes. Conclusion: Muslim women have socio-ethical, cultural and religious misconceptions on what constitutes health and practices as well as on the nature and etiology of BC. Cultural barriers and religious values of Muslim women were indicated to influence their health behaviors such as upholding their modesty when choosing health interventions. BC stigma and fear were also found to be key sources of psychological distress that discouraged Muslim women from undergoing BC screening. The study suggests the implementation of holistic effort in educating Muslim women to increase BC screening rate.     

Caring for patients with oral cancer in Taiwan: The challenges faced by family caregivers

Family caregivers face multiple challenges when caring for patients with oral cancer at home. Understanding the difficulties they face may assist health professionals to better organise and provide support for family caregivers of oral cancer patients. The aim of this study was to describe the caregivers’ primary tasks and the difficulties they encounter when caring for a family member with oral cancer. This qualitative study included a purposeful sample of 22 primary family caregivers ranging in age from 25 to 71 years old. The researchers used face‐to‐face, semi‐structured and tape‐recorded interviews to collect data and employed qualitative content analysis to elicit caregiving‐related themes. Six task‐related themes and associated challenges were identified. These included managing the patient's nutritional issues, investigating and making decisions about patient care, managing sudden and unpredictable changes in the patient's condition, managing emotional distress, adjusting their attitudes towards patient care, and seeking resources. Family caregivers handle such essential tasks when they care for patients in home settings and they face specific challenges related to them. This study identified several challenges related to each task. From the outset, healthcare providers should actively offer caregiving information and strategies. Health professionals can incorporate strategies for supporting caregivers’ ability to carry out these tasks into their treatment model and can help caregivers manage difficulties that can impede them from doing so.     

The Lived Experience of Australian Women Living with Breast Cancer: A Meta-Synthesis

Background: Breast cancer is the second most common cancer among Australian women. In 2019, an estimated 19,000 women in Australia were diagnosed with breast cancer, with around 3,058 women dying from the disease in the same year. Although many qualitative studies published in Australia exist which examine breast cancer from various perspectives, only limited literature is available which addresses Australian women’s lived experience of breast cancer from diagnosis, treatment and beyond. Method: Meta-synthesis of qualitative studies. Participants who took part in either semi-structured interviews or surveys with open-ended questions were included. A thematic synthesis analysis approach was used. Results: Five themes and 13 sub themes emerged from the data analysis which illustrated the lived experience of Australian women diagnosed with breast cancer. Emotional burden and women’s response towards their breast cancer diagnosis were key themes. Experience of decision- making , social distress, symptoms beyond changes in their body, fertility considerations and their role as mothers were some of the challenges during their treatment. Women coped and adjusted with these challenges through the support of their family, and healthcare providers. Women developed greater empowerment by making their life choices after treatment. Life choices such as getting into a new relationship was challenging for single women. Conclusion: Although most women were emotionally supported following their diagnosis, there are still areas where women could be better supported such as when having to break the news of their breast cancer diagnosis to their children, provision of ongoing emotional support for caregivers of women with breast cancer, providing constant emotional and informational support at the point of diagnosis and during their treatment, tailoring treatments according to different stages of pregnancy, and discussion of fertility treatments in timely manner by healthcare professionals.     

Responses by breast and prostate cancer patients to out-of-pocket costs in Newfoundland and Labrador

Purpose

Cancer patients face substantial care-related out-of-pocket (oop) costs that may influence treatment decisions, attitudes, and use of drug- or appointment-related cost-saving strategies. We examined the relationship between oop costs and care-related responses by patients.

Methods

We surveyed 170 prostate and 131 breast cancer patients presenting at clinics or support groups, or listed on the cancer registry in Newfoundland and Labrador.

Results

In the 3-month period before the survey, 18.8% of prostate and 25.2% of breast cancer patients had oop costs greater than $500. Those oop costs consumed more than 7.5% of quarterly household income for 15.9% of prostate and 19.1% of breast cancer patients. Few patients (8.8% prostate, 15.3% breast) ever adopted any drug- or appointment-related cost-saving strategy. Few patients (7.2% prostate, 9.6% breast) said oop costs influenced treatment decisions, told their physicians about their oop costs (27.0% prostate, 21.1% breast), or were aware of available financial assistance programs (27.3% prostate, 36.9% breast). Compared with patients having low or moderate oop costs (22.9% prostate, 16.7% breast, and 25.7% prostate, 58.3% breast respectively), a larger proportion of prostate (56.0%) and breast (58.3%) cancer patients with high oop costs said that those costs created stress. Among prostate cancer patients, a larger proportion of those having high oop costs (compared with low or moderate costs) used drug-related (22.2% vs. 3.3% and 9.6% respectively) and appointment-related (11.1% vs. 1.1% and 3.8% respectively) cost-saving strategies, said oop costs created an unusual amount of stress (48.0% vs. 18.4% and 10.4%), and had difficulty paying those costs (29.2% vs. 6.2% and 10.4%).

Conclusions

For a small group of breast and prostate cancer patients, oop costs are high, but rarely lead to the use of care-related cost-saving strategies or influence care decisions.     

Identifying critical steps towards improved access to innovation in cancer care: a European CanCer Organisation position paper

In recent decades cancer care has seen improvements in the speed and accuracy of diagnostic procedures; the effectiveness of surgery, radiation therapy and medical treatments; the power of information technology; and the development of multidisciplinary, specialist-led approaches to care. Such innovations are essential if we are to continue improving the lives of cancer patients across Europe despite financial pressures on our healthcare systems. Investment in innovation must be balanced with the need to ensure the sustainability of healthcare budgets, and all health professionals have a responsibility to help achieve this balance. It requires scrutiny of the way care is delivered; we must be ready to discontinue practices or interventions that are inefficient, and prioritise innovations that may deliver the best outcomes possible for patients within the limits of available resources. Decisions on innovations should take into account their long-term impact on patient outcomes and costs, not just their immediate costs. Adopting a culture of innovation requires a multidisciplinary team approach, with the patient at the centre and an integral part of the team. It must take a whole-system and whole-patient perspective on cancer care and be guided by high-quality real-world data, including outcomes relevant to the patient and actual costs of care; this accurately reflects the impact of any innovation in clinical practice. The European CanCer Organisation is committed to working with its member societies, patient organisations and the cancer community at large to find sustainable ways to identify and integrate the most meaningful innovations into all aspects of cancer care.     

Exploring long-term cancer survivors’ experiences in the career and financial domains: Interviews with hematopoietic stem cell transplantation recipients

Abstract

Using semi-structured interviews with 50 hematopoietic stem cell transplantation (HSCT) recipients who were 2 to 22 years post-transplant, this study investigates cancer survivors’ interpretations of their economic and work-related experiences during and after treatment. Survivors described a variety of challenges in these areas, including job insecurity, discrimination, career derailment, the lack of career direction, delayed goals, financial losses, insurance difficulties, constraints on job mobility, and physical/mental limitations. Survivors described the ways these challenges were offset by external factors that helped them to navigate these difficulties and buffered the negative financial and career-related impacts. Good health insurance, favorable job characteristics, job accommodations, and financial buffers were prominent offsetting factors. Most survivors, however, were also forced to rely on individual behavioral and interpretative strategies to cope with challenges. Behavioral strategies included purposeful job moves, retraining, striving harder, and retiring. Some strategies were potentially problematic, such as acquiring large debt. Interpretive strategies included reprioritizing and value shifts, downplaying the magnitude of cancer impact on one's life, denying the causal role of cancer in negative events, making favorable social comparisons, and benefit finding. Post-treatment counseling and support services may assist survivors in identifying available resources and useful strategies to improve long-term adaptation in the career and financial realms.     

Suboptimal Completion Rates,Adverse Events,Costs, Resource Utilization,and Cost Impact of Noncompletion in Oral Adjuvant Capecitabine–Based Chemotherapy in Patients With Early-Stage Colon Cancer

BackgroundSuboptimal completion of chemotherapy, which may involve reduced patient adherence, remains a serious issue and leads to reduced treatment efficacy. This study assessed the completion rates, risk factors for noncompletion, and cost impact for noncompletion in patients on capecitabine monotherapy (Cape) or capecitabine with oxaliplatin (CAPOX) for the adjuvant treatment of early-stage colon cancer.MethodsPatients with a diagnosis of early-stage colon cancer between April 2013 and March 2017 were retrospectively identified. Treatment completion was evaluated. Multivariate logistic regressions analyses were used to assess the baseline factors associated with noncompletion. Adverse events, costs, healthcare resource utilization, and cost impact for noncompletion were investigated.ResultsA total of 673 patients met the eligibility criteria, of which 382 (57%) were treated with Cape and 291 (43%) with CAPOX. The overall completion rate for adjuvant therapy was 40% (Cape 46%; CAPOX 33%). Noncompletion was associated with CAPOX treatment and higher healthcare costs within 6 months prior to chemotherapy. The 6-month unadjusted total healthcare costs were $44,444 for Cape and $71,247 for CAPOX. The nonchemotherapy costs were 41% higher for noncompleters than completers in both treatment groups (P = .002).ConclusionsThe real-world completion rates for adjuvant capecitabine–based chemotherapy in early-stage colon cancer patients are low. Noncompletion of therapy is associated with higher baseline healthcare costs. The nonchemotherapy costs are significantly higher in noncompleters than completers, highlighting the financial burden of managing adverse events and preexisting comorbidities, which may lead to early discontinuation of therapy. Effective strategies to optimize completion of oral chemotherapy may consider adherence monitoring.     

Experiences of Turkish Women with Breast Cancer During the Treatment Process and Facilitating Coping Factors

Background: Breast cancer is the most common type of cancer among women in Turkey and around theworld. Treatment adversely affects women’s physical, psychological, and social conditions. The purpose of thisstudy was to identify the experiences of Turkish women with breast cancer and the facilitating coping factorswhen they receive chemotherapy. Methods: A phenomenological approach was used to explain the experiencesand facilitating factors of breast cancer patients during the treatment period. Data were collected throughindividual semi-structured interviews. The sample comprised 11 women with breast cancer receiving treatment.Results: At the end of the interviews conducted with women with breast cancer, two main themes were identified:adjustment and facilitating coping factors. The adjustment main theme had two sub-themes: strains and coping.Women with breast cancer suffer physical and psychological strains as well as stress related to social and healthsystems. While coping with these situations, they receive social support, turn to spirituality and make new sensesof their lives. The facilitating coping factors main theme had four sub-themes: social support, disease-relatedfactors, treatment-related factors and relationships with nurses. It has been determined that women receivinggood social support, having undergone preventive breast surgery and/or getting attention and affection fromnurses can cope with breast cancer more easily. Conclusions: Women with breast cancer have difficulty in allareas of their lives in the course of the disease and during the treatment process. Therefore, nurses should provideholistic care, teaching patients how to cope with the new situation and supporting them spiritually. Since familysupport is very important in Turkish culture, patients’ relatives should be informed and supported at every stageof the treatment.     

Implant survival rate after oral cancer therapy: a review

The overall impression regarding the success of dental implants (DI) in patients having undergone oral cancer therapy remains unclear. The aim of the present review study was to assess the implant survival rate after oral cancer therapy. Databases were explored from 1986 up to and including September 2010 using the following keywords in various combinations: "cancer", "chemotherapy", "dental implant", "oral", "osseointegration", "radiotherapy", "surgery" and "treatment". The eligibility criteria were: (1) original research articles; (2) clinical studies; (3) reference list of pertinent original and review studies; (4) intervention: patients having undergone radio- and chemotherapy following oral cancer surgery; and (5) articles published only in English. Twenty-one clinical studies were included. Results from 16 studies reported that DI can osseointegrate and remain functionally stable in patients having undergone radiotherapy following oral cancer surgery; whereas three studies showed irradiation to have negative effects on the survival of DI. Two studies reported that DI can osseointegrate and remain functionally stable in patients having undergone chemotherapy. It is concluded that DI can osseointegrate and remain functionally stable in patients having undergone oral cancer treatment.     

Recommending Unfunded Innovative Cancer Therapies: Ethical vs. Clinical Perspectives among Oncologists on a Public Healthcare System—A Mixed-Methods Study

Over the past decade, there has been a growing development of innovative technologies to treat cancer. Many of these technologies are expensive and not funded by health funds. The present study examined physicians’ perceptions of the ethical and clinical aspects of the recommendation and use of unfunded technologies for cancer treatment. This mixed-methods study surveyed 127 oncologists regarding their perceptions toward using unfunded innovative cancer treatment technologies, followed by in-depth interviews with 16 oncologists. Most respondents believed that patients should be offered all treatment alternatives, regardless of their financial situation. However, 59% indicated that they often face dilemmas regarding recommending new unfunded treatments to patients with financial difficulties and without private health insurance. Over a third (38%) stated that they felt uncomfortable discussing the cost of treatment with patients. A predictive model found that physicians facing patients whose medical condition worsened due to an inability to access new treatments, and who expressed the opinion that physicians can assist in locating funding for patients who cannot afford treatments, were more likely to recommend unfunded innovative therapies to patients (F = 5.22, R² = 0.15, p < 0.001). Subsequent in-depth interviews revealed four key themes: economic considerations in choosing therapy, patient–physician communication, the public healthcare fund, and discussion of treatment costs. Physicians feel a professional commitment to offer patients the best medical care and a moral duty to discuss costs and minimize patients’ financial difficulty. There is a need for careful and balanced use of innovative life-prolonging technologies while putting patients at the center of discourse on this complex and controversial issue. It is essential to develop a psychosocial support program for physicians and patients dealing with ethical and psychosocial dilemmas and to set guidelines for oncologists to conduct a comprehensive and collaborative physician–patient discourse regarding all aspects of treatment.     

Paying for personalized care: cancer biomarkers and comparative effectiveness

Genomic-based diagnostics can play a key role in creating a more efficient healthcare system by directing patients toward beneficial therapies and away from therapies that pose substantial risk or are unlikely to improve outcomes for the patient. We outline how the value provided by diagnostics is closely linked to a range of factors including magnitude of health outcome improvement, avoiding adverse effect, diagnostic parameters, process of care, resource utilization, and costs. Comparative effectiveness approaches to evidence generation, including health outcome measurements, quality of life, economic analyses, decision modeling, and pragmatic clinical trials, can be used to provide stakeholders with a range of information to inform treatment, guidelines, coverage, and reimbursement decisions. Evidence of comparative effectiveness can also help support value-based reimbursement of cancer biomarkers and treatment strategies as means of paying for personalized medicine.     

The Direct and Indirect Costs of Cancer among the Lower-Income Group: Estimates from a Pilot and Feasibility Study

Background: Healthcare in Malaysia is largely publicly funded, however, cancer could still result in out-of-pocket (OOP) expenses, which may burden the affected patients. This is especially relevant to those in the lower-income group. This pilot study was conducted to estimate the direct and indirect costs of cancer and evaluate the feasibility of obtaining these costs information from the lower-income cancer patients undergoing treatment. Methods: A cross-sectional study of patients with cancer was conducted in Hospital Kuala Lumpur between September and October 2020. Self-reported data from the patients were collected using face-to-face interviews. Detailed information about cancer-related OOP expenses including direct medical, direct non-medical, and productivity loss in addition to financial coping strategies were collected. Costs data were estimated and reported as average annual total costs per patient. Results: The mean total cost of cancer was estimated at MYR 7955.39 (US$ 1893.46) per patient per year. The direct non-medical cost was the largest contributor to the annual cost, accounting for 46.1% of the total cost. This was followed by indirect costs and direct medical costs at 36.0% and 17.9% of the total annual costs, respectively. Supplemental food and transportation costs were the major contributors to the total non-medical costs. The most frequently used financial coping strategies were savings and financial support received from relatives and friends. Conclusion: This study showed that estimation of the total cost of cancer from the patient’s perspective is feasible. Considering the significant impact of direct non-medical and indirect costs on the total costs, it is vital to conduct further exploration of its cost drivers and variations using a larger sample size.     

The economics of cancer care in the UK

Cancer care accounts for an increasing proportion of global spending on healthcare, driven by an increased incidence caused by ageing populations, greater frequency from better treatments, and changes in care that have made cancer a chronic, controllable illness. The cost of cancer care has three components: direct and easily determined clinical costs (ie, medical costs); extra financial requirement of living with disease for the patient and their family (ie, morbidity costs); and loss of income from the premature death (ie, mortality costs). Effective planning of cancer services needs detailed consideration of the economics of care delivery-an area of research that has so far been lacking outside the USA. Here, we review the literature and attempt to answer key questions on the economics of cancer care, including probable changes in disease burden over the next 20 years, changes in the way costs will be distributed between carers and delivery services, changing patterns of service delivery, and the direct contribution patients will make to treatment costs in terms of co-payments and escalating costs of comorbidity in elderly populations.     

Cost-related medication nonadherence and cost-saving strategies used by elderly Medicare cancer survivors

Objectives  

This study was conducted to compare cost-related medication nonadherence among elderly Medicare enrollees with and without cancer and to describe the strategies cancer survivors used to offset the costs of medications.