The multidimensional nature of the financial and economic burden of a cancer diagnosis on patients and their families: qualitative findings from a country with a mixed public�Cprivate healthcare system

Purpose

Although awareness is increasing that cancer can have an adverse financial and economic impact for patients, the overall burden remains poorly understood. To elucidate these issues, we used qualitative methods to explore the financial impact of a cancer diagnosis in Ireland, which has a mixed public?Cprivate healthcare system and where sick leave and sick pay are at employers?? discretion.

Methods

Face-to-face semi-structured interviews were conducted with hospital-based oncology social workers (OSWs; 21 OSWs from 11 hospitals) and patients (20 from eight hospitals; 11 breast, 5 prostate and 4 lung cancer). Participants were asked about the (1) extra expenses incurred, (2) cancer??s impact on work and income, and (3) accessing financial assistance/social welfare benefits. The two interview sets were analysed separately using thematic analysis.

Results

Broad themes that emerged included the wide range of additional cancer-related medical and non-medical expenses incurred by all patients, including those with medical cards (which entitle the bearer to receive health services free of charge) and those with private health insurance; the major impact of cancer and its treatment on work and patient/household income (all patients who were working at diagnosis experienced a drop in income); and difficulties in accessing medical cards and benefits.

Conclusions

This study reveals the complex, multidimensional nature of the financial and economic burden cancer imposes on patients and the whole family unit. Changes in income post-cancer exacerbate the effects of cancer-related out-of-pocket expenses. These findings have implications for healthcare professionals, service providers and policy makers.     

Awareness,concern, and communication between physicians and patients on bone health in cancer

Purpose

This study aims to explore physician–patient communications about bone metastases and cancer treatment-induced bone loss (CTIBL).

Methods

The study utilizes online survey of patients with breast cancer, prostate cancer, and multiple myeloma, and the physicians who treat them.

Results

Even though 69 and 48 % of patients with nonmetastatic breast and prostate cancer aware of treatment-induced bone loss, only 39 and 23 %, respectively, were concerned about bone loss. Yet, 62 and 71 % of oncologists treating breast and prostate cancer felt that their patients were concerned. Among patients with metastatic breast and prostate cancer, two thirds had not discussed treatment for bone metastases with their doctor; when discussed, 88 and 91 % of discussions were initiated by the doctor, usually prior to initiating treatment. Most myeloma patients (77 %) had discussed treatment options with their physicians; 99 % of hematologists reported discussing treatment of bone disease with patients.

Conclusions

Physicians are primary sources of information to patients regarding bone health. There is a gap between what physicians assume their patients know about bone health and the patients’ perceptions, presenting a need for systematic awareness and education.     

Physical activity preferences of early-stage lung cancer survivors

Purpose

Engagement in physical activity can provide important benefits for cancer patients and survivors, including those diagnosed with lung cancer. Despite this, many survivors do not engage in recommended levels of physical activity and little is known about the obstacles encountered by lung cancer survivors. The current study examines the physical activity preferences of early-stage lung cancer survivors.

Method

As part of a larger survey study, 175 non-small cell lung cancer survivors who were on average 3.6 years from surgical treatment responded to questions regarding their preferences for physical activity and physical activity advice. Demographic and medical characteristics were also collected.

Results

The majority of respondents (62 %) reported a desire to receive advice regarding physical activity, predominantly before treatment (68 %), in face-to-face interactions (95 %) with a physician (80 %), and within the context of a cancer care center (92 %). Approximately half of participants indicated they would be interested in an exercise program tailored to lung cancer survivors and most individuals (73 %) reported feeling capable of engaging in an exercise program. Differences in physical activity preferences emerged based on demographic and disease characteristics.

Conclusions

The majority of participants reported a desire for physical activity advice and a willingness to engage in physical activity. Important differences were found based on demographic and medical characteristics, which may warrant consideration in the development and dissemination of physical activity interventions for this cancer survivor population.     

How much does it cost to care for survivors of colorectal cancer? Caregiver’s time, travel and out-of-pocket costs

Purpose

Cancer treatment is increasingly delivered in an outpatient setting. This may entail a considerable economic burden for family members and friends who support patients/survivors. We estimated financial and time costs associated with informal care for colorectal cancer.

Methods

Two hundred twenty-eight carers of colorectal cancer survivors diagnosed on October 2007–September 2009 were sent a questionnaire. Informal care costs included hospital- and domestic-based foregone caregiver time, travel expenses and out-of-pocket (OOP) costs during two phases: diagnosis and treatment and ongoing care (previous 30 days). Multiple regression was used to determine cost predictors.

Results

One hundred fifty-four completed questionnaires were received (response rate?=?68 %). In the diagnosis and treatment phase, weekly informal care costs per person were: hospital-based costs, incurred by 99 % of carers, mean?=?€393 (interquartile range (IQR), €131–€541); domestic-based time costs, incurred by 85 %, mean?=?€609 (IQR, €170–€976); and domestic-based OOP costs, incurred by 68 %, mean?=?€69 (IQR, €0–€110). Ongoing costs included domestic-based time costs incurred by 66 % (mean?=?€66; IQR, €0–€594) and domestic-based OOP costs incurred by 52 % (mean?=?€52; IQR, €0–€64). The approximate average first year informal care cost was €29,842, of which 85 % was time costs, 13 % OOP costs and 2 % travel costs. Significant cost predictors included carer age, disease stage, and survivor age.

Conclusion

Informal caregiving associated with colorectal cancer entails considerable time and OOP costs. This burden is largely unrecognised by policymakers, service providers and society in general. These types of studies may facilitate health decision-makers in better assessing the consequences of changes in cancer care organisation and delivery.     

Assessing information and service needs of young adults with cancer at a single institution: the importance of information on cancer diagnosis, fertility preservation, diet, and exercise

Background

Young adults (YA) with cancer have unique psychosocial and medical needs. The objective of this study was to identify information and service needs important to YA cancer patients.

Methods

A supportive care needs survey was administered to ambulatory patients (<age 35 years) who were within 5 years of completing therapy at an adult hospital. Participants were asked to rate the importance of 18 sources of information or resources on a scale from 1 to 10. The relationship between gender, type of cancer, current treatment status, and marital status on the importance of these factors was explored using ANOVA.

Results

Median age of 243 respondents was 28 years (range 17–35); 61 % male. The most common diagnoses were: lymphoma (28 %), leukemia (19 %), testis (16 %), CNS (9.5 %), and sarcoma (8.6 %). Forty percent were currently receiving treatment; the majority were single/never married (67 %). Thirty-eight percent of respondents felt it was important or very important to receive care in a dedicated unit with other young people. More than 80 % rated the following items at least 8/10 in importance: information on their specific malignancy (treatment, risk of recurrence), effects of treatment on fertility, information on maintaining a healthy diet, and exercise/physical fitness during cancer treatment. Women were more likely to consider information/service needs more important than men.

Conclusions

YA’s have clear supportive care preferences and needs. Developing programs that incorporate the services identified as important should improve quality of life, psychosocial adjustment, and other outcomes during and after cancer therapy.     

A survey of Canadian cancer patients’ perspectives on the characteristics and treatment of breakthrough pain

Objective

Breakthrough pain is defined as a transient exacerbation of pain that occurs spontaneously or in response to a trigger despite stable and controlled background pain. The purpose of this study was to explore Canadian patients’ awareness of and experience with breakthrough pain in cancer (BTPc).

Methods

Four Canadian cancer centers participated in a non-interventional survey recruiting cancer patients who experienced breakthrough pain. These patients were asked about their pain, its impact on functioning, current management and interest in new treatments of BTPc.

Results

Ninety-four Canadian cancer patients participated in this study, with 96 % stating that cancer pain impacted their daily living with over half unable to go to work or shopping. Fifty percent of patients said that an episode of BTPc lasted greater than 60 minutes, with the pain score being on average 7.8/10, impacting normal work (7.2/10) and general activity (7.1/10). Only 35 % of patients were very satisfied with the speed of relief of their medications. Those who did not take their breakthrough pain medication for every episode stated that was because the pain was not always severe (37 %), or they were afraid of becoming tolerant (23 %) or addicted (12 %). Patients stated that the most important features of a new treatment for BTPc were the ability to relieve pain completely (47 %), and quickly (43 %). Patients expressed willingness to try transmucosal products (80 %) or nasal products (59 %).

Conclusion

Breakthrough cancer pain in Canadian cancer patients greatly impacts their daily lives. There is room for improvement in the management of BTPc, and the majority of patients would be willing to try new treatments.     

The attitudes of Korean cancer patients, family caregivers, oncologists, and members of the general public toward advance directives

Purpose

The purpose of this study was to investigate Korean attitudes toward advance directives (ADs) among cancer patients, family caregivers, oncologists, and the general public.

Methods

A multicenter survey study explored the attitudes of participants to ADs, and hospice–palliative care (HPC) was conducted. A total of 1,242 cancer patients, 1,289 family caregivers, 303 oncologists, and 1,006 members of the general public participated in the survey.

Results

The majority of patients, family caregivers, oncologists, and general public agreed with the necessity of ADs. However, oncologists regard “when became terminal status” as an optimal timing for completion of ADs (52.2 %), while other groups regard earlier periods as it. More than 95 % oncologist answered that cardiopulmonary resuscitation and mechanical ventilator are necessity items for ADs form, while around 70 % of other groups answered so. Multivariate analysis revealed that several factors including agreement with terminal disclosures and a positive attitude toward HPC were independently associated with necessity of ADs.

Conclusions

We found that attitudes toward ADs among cancer patients, family caregivers, oncologists, and the general public were significantly different. Our study also suggests that favorable attitudes toward comfort end-of-life care and HPC are keys that influence the perceived need for ADs.     

Effect of general symptom level, specific adverse events, treatment patterns, and patient characteristics on health-related quality of life in patients with multiple myeloma: results of a European, multicenter cohort study

Purpose

Novel multiple myeloma (MM) therapies have increased patient longevity but are often associated with notable symptom burden. This study quantified the effect of general symptom level, specific symptoms, and treatment-related adverse events (AEs) on MM patients’ health-related quality of life (HRQoL).

Methods

The European Organization for Research and Treatment of Cancer (EORTC) generic cancer questionnaire (Quality of Life Questionnaire Core 30) and MM-specific questionnaire (QLQ-MY20) were used in this study to assess patients’ HRQoL. Data were collected on sociodemographics, disease and treatment history, and the presence/severity of MM-related symptoms or treatment-related AEs from patients with MM in 11 UK and German centers. Multiple regression analyses were conducted.

Results

Of 154 patients (63 % male; mean age, 66.4 years; mean time since diagnosis, 3.7 years; 52 % currently on treatment; and 43 % with ≥1 prior MM therapy), 25, 32, 31, and 11 % were severely symptomatic, moderately symptomatic, mildly symptomatic, and asymptomatic, respectively. Fatigue (59 %), bone pain (51 %), sleepiness (36 %), hypoesthesia or paresthesia (33 %), and muscle cramps (31 %) were most commonly reported. Moderate and severe general symptom levels, bone symptoms, depression, and mental status changes were identified as strong determinants of HRQoL.

Conclusions

Severity, type of disease symptoms, and treatment-related AEs are important HRQoL determinants in patients with MM, allowing for targeted treatment.     

Informed decision making in advance care planning: concordance of patient self-reported diagnosis with physician diagnosis

Purpose

This study aimed to determine the extent to which patients with advanced cancer agree with their physicians regarding their cancer diagnoses prior to engaging in advance care planning (ACP) and whether variables such as age and level of education correlate with the degree of patient–physician concordance.

Methods

One hundred and fifty patients with a diagnosis of cancer and an estimated life expectancy of 18 months or less completed questionnaires about their cancer diagnoses prior to creating an advance directive. A review of the patients’ medical records was performed and the physician-designated diagnosis was identified for each patient. Patient–physician agreement on diagnosis was coded based on predetermined study criteria. Concordance rates were expressed in percentages.

Results

The majority of patients (62.2 %) were in exact agreement with their physicians; 24.3 % were in partial agreement with the patient missing part of the diagnosis, and 9.5 % were in partial agreement with the physician missing part of the diagnosis; 4.1 % did not agree with their physicians on diagnosis. Age and education level did not correlate with patient–physician concordance rates.

Conclusions

The majority of patients with advanced cancer correctly identified their cancer diagnosis. However, almost 40 % were not in full agreement with their physicians regarding diagnosis, a situation that has bearing on efforts to engage in meaningful shared decision making as well as advance care planning.     

Treatment of oral mucositis pain following radiation therapy for head-and-neck cancer using a bioadhesive barrier-forming lipid solution

Purpose

CAM2028, a vehicle that forms a bioadhesive lipid barrier when applied to the oral mucosa, was developed as a carrier system for local delivery of benzydamine, an NSAID used for pain relief in oral mucositis. This trial compared the analgesic effect of CAM2028 plus benzydamine (CAM2028-benzydamine) with unmedicated CAM2028 (CAM2028-control) for the treatment of oral mucositis in patients with head-and-neck cancer.

Methods

Thirty-eight study participants were enrolled during their 3rd to 4th week of radiation therapy. Participants were required to have symptomatic oral mucositis (WHO Grade 2 or above) at screening and pain scores of at least 6 on an 11-point Likert scale at screening and on each day before treatment with study medication. After undergoing radiation, patients were administered a single dose of CAM2028-control or CAM2028-benzydamine 2 days apart, in a randomized crossover fashion. Pain was assessed over the following 8 h.

Results

With both treatments, patients experienced a mean 40 % decrease in pain intensity at 6 h (the primary study endpoint). Both treatments resulted in significant pain relief within 5 min of application that was evident during the entire 8-h assessment period. There was no difference in pain relief between the two interventions at any time point. Both treatments were safe and well tolerated.

Conclusions

CAM2028-benzydamine and CAM2028-control were both efficacious in reducing pain in patients with oral mucositis related to radiation therapy for head-and-neck cancer. Analgesic effects of both medications were immediate, clinically significant, and persistent for up to 8 h.     

How breast cancer survivors cope with fear of recurrence: a focus group study

Purpose

The aim of this qualitative study was to examine the ways in which breast cancer survivors cope with fear of recurrence.

Methods

Three focus groups were held with breast cancer survivors. Focus group interviews were recorded, transcribed verbatim, and analyzed using qualitative techniques. Coding was done on two levels: styles and strategies.

Results

Twenty-seven women participated. The majority of the women (74 %) were a little anxious, and some patients (11 %) were somewhat anxious about the possibility of cancer recurrence. Most women (74 %) indicated to think a few times a month about the possibility of cancer recurrence. Different coping styles were reported, but commonly, women (80 %) reported an emotion-focused coping strategy. About half of the women (49 %) used passive or avoidant coping styles.

Conclusion

The emotion-focused coping strategy was most commonly used. This information can be used to provide tailored psychosocial care.     

Individual and dyadic development of personal growth in couples coping with cancer

Rationale

Couples share distress as well as potential personal growth (PG) after a cancer diagnosis. It is essential for professionals to learn more about the ways couples cope together with adversity. Dyadic results may help to understand controversial results in the PG literature and inform clinicians in optimizing psychological support for couples.

Objective

We examine the temporal and dyadic development of PG among patients and their intimate partners. In addition, life threat is examined as a potential factor influencing PG after cancer diagnosis.

Methods

We assessed PG using the Personal Growth Inventory in a clinically representative, mixed-type and mixed-stage cancer cohort (N?=?154 couples) 6 and 12 months after cancer diagnosis. Medical data on cancer diagnoses and treatments were collected from physicians. Actor–partner interdependence models were applied.

Results

PG was reported by patients and their partners. Women (either as patients or partners) reported more PG than male patients or partners. PG remained relatively stable over 6 months and was related to whether the patient was receiving curative or palliative treatment. Female patients experienced less PG 6 months after the cancer diagnosis and if treatment was curative. Male patients experienced less PG if their partners experienced PG, and the treatment was curative.

Conclusions

Dyadic growth is a phenomenon not limited to breast cancer or female patient couples and may represent a form of dyadic coping. Patients and partners seem to develop individual and dyadic growth, depending on a combination of gender and life threat. Psycho-oncology services may want to promote both couple level coping and support in order to optimize cancer care.     

Survival in solid cancer patients following intensive care unit admission

Purpose

One in seven patients admitted to intensive care units (ICU) has a cancer diagnosis but evidence on their expected outcomes after admission has not been synthesised.

Methods

Systematic literature review of solid cancer adult patients admitted to ICU from 2000 onwards using EMBASE and MEDLINE electronic databases.

Results

There were 48 papers identified that reported survival in ICU patients with solid cancers. ICU mortality was reported in 35 studies comprising a total sample of 25,339 patients and ranging from 4.5 to 85 %. The average mortality of the distribution of reported mortality rates within ICU was 31.2 % (95 % CI 24.0–39.0 %). Hospital mortality was reported in 31 studies across a total sample of 74,061 patients. The average hospital mortality was 38.2 % (33.8–42.7 %) and ranged from 4.6 to 76.8 %. Poorer physiological score, invasive mechanical ventilation and poor functional status were associated with higher mortality.

Conclusions

Several factors have been associated with poor survival in ICU cancer patients; however, primary research is still needed to describe outcomes in cancer patients with sufficient case mix and treatment details to be of prognostic value to clinicians.     

Physical activity interests and preferences in palliative cancer patients

Goals of the work

The purpose of the present study was to examine the physical activity interests and preferences of palliative cancer patients.

Patients and methods

Fifty advanced cancer patients aged 18 years or older with clinician-estimated life expectancy of less than 12 months and Palliative Performance Scale greater than 30% were recruited from an outpatient palliative care clinic and a palliative home care program. An interviewer-administered survey was used to assess physical activity behavior, interests, and preferences.

Main results

The majority of palliative cancer patients in this sample indicated that they would be interested and felt able to participate in a physical activity program. There were strong preferences for home-based physical activity programs that could be completed alone. The majority of participants in this sample reported walking as the type of physical activity in which they were most interested.

Conclusions

These findings suggest that this sample of palliative cancer patients is interested and feel able to participate in a physical activity program. Examining these unique physical activity preferences may aid in the development of an appropriate physical activity program for palliative cancer patients that can be tested in clinical research.     

Symptom clusters of pain, depressed mood, and fatigue in lung cancer: assessing the role of cytokine genes

Purpose

Symptom clusters, the multiple, co-occurring symptoms experienced by cancer patients, are debilitating and affects quality of life. We assessed if a panel of immune-response genes may underlie the co-occurrence of severe pain, depressed mood, and fatigue and help identify patients with severe versus non-severe symptom clusters.

Methods

Symptoms were assessed at presentation, prior to cancer treatment in 599 newly diagnosed lung cancer patients. We applied cluster analyses to determine the patients with severe versus non-severe symptom clusters of pain, depressed mood, and fatigue.

Results

Two homogenous clusters were identified. One hundred sixteen patients (19 %) comprised the severe symptom cluster, reporting high intensity of pain, depressed mood, and fatigue and 183 (30 %) patients reported low intensity of these symptoms. Using Bayesian model averaging methodology, we found that of the 55 single nucleotide polymorphisms assessed, an additive effect of mutant alleles in endothelial nitric oxide synthase (-1474 T/A) (posterior probability of inclusion (PPI)?=?0.78, odds ratio (OR)?=?0.54, 95 % credible interval (CI)?=?(0.31, 0.93)); IL1B T-31C (PPI?=?0.72, OR?=?0.55, 95 % CI?=?(0.31, 0.97)); TNFR2 Met¹⁹⁶Arg (PPI?=?0.70, OR?=?1.85, 95 % CI?=?(1.03, 3.36)); PTGS2 exon 10+837T?>?C (PPI?=?0.69, OR?=?0.54, 95 % CI?=?(0.28, 0.99)); and IL10RB Lys⁴⁷Glu (PPI?=?0.68; OR?=?1.74; 95 % CI?=?(1.04, 2.92)) were predictive for symptom clusters.

Conclusions

Genetic polymorphisms may facilitate identification of high-risk patients and development of individualized symptom therapies.     

Reduction of health risk factors through an adapted physical activity program in patients with breast cancer

Purpose

After a breast cancer diagnosis, patients are at high risk of reducing their physical activity and gaining weight. Lack of physical activity and weight gain are known negative but modifiable prognostic factors. An observational study of a 3-month adapted physical activity (APA) program was performed to assess its effectiveness in improving physical activity level and reducing risk factors related to health during or after breast cancer treatments.

Method

Height, weight, and waist circumference (WC) were measured at the beginning and end of the 26-session program. Body mass index (BMI) and WC to height ratio (WHtR) were calculated. Physical activity profile, aerobic capacity, and usual average daily energy expenditure were estimated. Median values were compared using nonparametric tests.

Results

Sixty-one (61) voluntary breast cancer patients attended 80 % of the sessions. At baseline, median (minimum–maximum) BMI was 23.3 (16.1–36.8)?kg.m^?2 and WC and WHtR showed metabolic risks. After 3 months, anthropometric data remained stable. Moderate physical activity significantly improved (+13 min/day) and sedentary tended to decrease (?18 min/day).

Conclusion

A 3-month APA program allows patients to limit risk factors related to health such as physical inactivity and metabolic risks. This study reinforces the need to promote physical activity as early as possible in cancer patients' care.     

Patterns of physical activity participation across the cancer trajectory in colorectal cancer survivors

Purpose

The purpose of the present study was to explore the participation in physical activity (PA) by colorectal cancer survivors across cancer trajectories and based on selected demographic and medical variables.

Methods

A total of 431 participants were surveyed individually at the Shinchon Severance Hospital, Seoul, Korea, to determine their PA levels before diagnosis, during treatment and after completion of cancer treatment.

Results

Percentage of survivors meeting American College of Sports Medicine guideline significantly reduced from 27 % before diagnosis to 10 % during treatment due to reduced strenuous intensity PA (28.8?±?106.2 vs 11.8?±?95.9 min, p?=?0.042), while total PA and mild intensity PA did not change. Total (187.2?±?257.7 vs. 282.6?±?282.0 min, p?<?0.001) and mild (99.1?±?191.5 vs. 175.1?±?231.2 min, p?<?0.001) intensity PA significantly increased after the completion of treatments compared with their PA level before diagnosis. Further analyses showed that age (more vs. equal or less than 60 years) and chemotherapy (chemotherapy vs. no chemotherapy) significantly influenced the level of physical activity (p?=?0.004). Survivors who were older or received chemotherapy increased their total PA and mild intensity PA after the completion of treatment more than those who did not receive chemotherapy.

Conclusions

The level and the pattern of physical activity by colorectal cancer survivors differed across cancer trajectories, which were significantly influenced by age and adjuvant chemotherapy.