Identifying barriers to cancer survivors sharing their survivorship care plans with their healthcare provider

Purpose

To understand what factors influence whether a cancer survivor will share their survivorship care plan (SCP) with their healthcare provider (HCP).

Methods

We used data from 3231 cancer survivors who utilized the OncoLink SCP resource between 2009 and 2016. Random forest and stepwise regression were used to identify predictors of SCP satisfaction and barriers to survivors sharing their care plans with their HCPs.

Results

Eighty-seven percent of users rated their satisfaction with their SCP as good or better; however, only 70% of survivors planned to share their SCP with their HCP. The most commonly reported reason for not sharing was a feeling that their HCP would not care. Self-reported satisfaction with their SCP was strongest predictor of whether a survivor would share their SCP. Gender, cancer status, number of chemotherapies received, and who was managing their healthcare were all associated with self-reported survivor satisfaction with their SCP.

Conclusions

Survivor satisfaction with SCPs was high, but there was a disconnect in the number of satisfied survivors and the number of survivors planning to share their SCP with their HCP. To bridge this gap, additional prompts that HCPs are expecting this information should be added to the care plans.

Implications for Cancer Survivors

One of the primary functions of survivorship care plans is to improve communication between survivor and healthcare provider. While survivors are overwhelmingly satisfied with their SCP, additional steps are necessary to get survivors to share their SCP with their HCP.

     

Follow-up care for cancer survivors: the views of clinicians

Background:

Evidence for the efficacy of late effects surveillance in adult cancer survivors is lacking and there is little agreement among clinicians on appropriate follow-up care.

Methods:

We report the views of both cancer experts and general practitioners (GPs) on long-term follow-up provision for cancer survivors, focussing on the 18–45 years age group. A total of 421 cancer experts (36% haematologists, 33% oncologists, 18% surgeons, 10% nurses, 2% other) and 54 GPs responded to a structured online survey. Reasons for follow-up care (clinical or supportive); advantages and disadvantages of follow-up in primary care; current practice; and resources required for a quality follow-up service were assessed.

Results:

Clinicians valued clinical reasons for follow-up more highly than supportive reasons (P<0.001). Learning more about late effects and checking for cancer recurrence were rated as the most important reasons for follow-up by cancer experts and GPs. A total of 85% of cancer specialists hold follow-up consultations alongside patients on active treatment. Cancer experts agreed that primary care follow-up would increase their availability for acute oncological care, but reduce information on late effects. The most important resource to provide a quality follow-up service was specialist nursing support (91%).

Conclusions:

Follow-up guidelines that include late effects surveillance are needed. Where and who should deliver this care requires further debate.     

Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care

Purpose

Young adult survivors (YAS) of childhood cancer require annual adult-focused, cancer-related follow-up given their risk for late effects of treatment. This study describes perception of and engagement with adult-focused, cancer-related follow-up care and general health care among YAS formally transferred to adult care from pediatric survivorship care.

Methods

YAS transferred from pediatric survivorship care in the prior 1–5 years completed measures indicating engagement with cancer-related follow-up care, other health care utilization, content of communication by providers, quality of cancer-related care, and satisfaction with health care in the prior year.

Results

Eighty YAS (M age?=?27.7 years, M time since diagnosis?=?10.4 years) participated. Just over half of YAS surveyed (n?=?44, 55 %) endorsed continuing cancer-related follow-up care since transfer. Those with cancer-related follow-up endorsed seeing subspecialty survivorship providers (n?=?16, 44 %) and primary care providers (n?=?22, 50 %) or utilizing a shared care model (n?=?6, 14 %). About a third of YAS endorsed seeing subspecialists (n?=?29, 36 %) or using other support services (n?=?22, 27 %). YAS-perceived content of communication varied significantly depending on care model with less cancer-related content being discussed by primary care providers, though perceived quality of cancer-related care and satisfaction with health care was generally favorable.

Conclusions

YAS report less than optimal engagement in cancer-related follow-up care and communication in their health care encounters.

Implications for Cancer Survivors

Young adult survivors should receive anticipatory guidance about expectations for delivery and content of adult-focused cancer-related follow-up care.

     

The experience of financial stress among emerging adult cancer survivors

Abstract

Objective: The experience of cancer-related financial stress was examined within the developmental context of emerging adulthood.

Methodological approach: This study is a secondary analysis of data drawn from two samples of testicular or hematologic cancer survivors. In-depth interviews from 52 emerging adult (EA) cancer survivors, ages 18–29, were coded by combining thematic analysis with an abductive approach.

Findings: Emergent themes included some common to most age groups, including worries about medical costs and availability of health insurance, as well as specific age-related concerns, such as fertility preservation. Financial stress appeared to interrupt developmental tasks of emerging adulthood, including completing an education, establishing independence, and managing relationships. Surprisingly, financial stress was experienced as a benefit for some participants.

Conclusion: Financial stress affects EA cancer survivors in unique ways. To provide support, health professionals should consider survivors’ developmental life stage to understand their financial stress, and ultimately, to improve quality of life.     

Barriers to seeking cancer information among Spanish-speaking cancer survivors

Background. Hispanics face barriers in seeking cancer information from sources such as the National Cancer Institute’s Cancer Information Service. Their cancer screening rates are lower than those for whites. Methods. Three focus groups were conducted with 40 Spanish-speaking cancer survivors. Results. Few patients had used a toll-free telephone number to get cancer information. Only five had used the Internet. Fear of feeling worse was a common concern in seeking cancer information, as was trying to discuss their cancer in English. Spanish language media promotions were recommended. Conclusions. Beliefs and attitudes about cancer must be taken into account when developing culturally competent education programs for Spanish speakers.     

Survivorship care needs among LGBT cancer survivors

Objective: To better understand survivorship care needs among LGBT cancer survivors. Design: We administered an anonymous online survey. Sample: LGBT cancer survivors living in the United States. Methods: Participants were recruited via the National LGBT Cancer Project. The survey measured sociodemographic characteristics, social support, posttraumatic stress, and survivorship care needs. Results: Approximately 72% of our 114 participants were cisgender male and 87% were white. Almost all participants reported at least some unmet survivorship care needs (73%), with over half of participants reporting unmet psychological and sexuality care needs. Participants who reported their oncologist was not LGBT-competent had greater unmet needs (t(82) = 2.5, p = 0.01) and greater posttraumatic stress (t(91) = 2.1, p = 0.035). Conclusions: LGBT cancer survivors have significant unmet survivorship care needs, and lack of oncologist LGBT-competence is associated with unmet needs. Implications for Psychosocial Providers: Our results suggest the need for LGBT competency training for providers.     

Views of primary care physicians and oncologists on cancer follow-up initiatives in primary care: an online survey

Introduction  

Primary care physicians (PCPs) are playing an increasing role in the follow-up of cancer in England. In 2003 a Cancer Care Review (CCR) was introduced to ensure contact between PCPs and cancer patients within 6 months of diagnosis. The NHS also intends to introduce survivorship care plans (SCP). The aims of this study were to: describe current practice and views in primary care with respect to the CCR and information provision from secondary to primary care following final discharge from hospital follow-up; and to seek views on the perceived usefulness, content, and feasibility of a SCP.     

Under use of necessary care among cancer survivors

Comorbid conditions are the major threat to life for many cancer survivors, yet little is known about the quality of the noncancer-related health care they receive. The authors analyzed the Medicare claims of 14,884 Medicare-eligible, 5-year colorectal carcinoma survivors who were diagnosed initially while they lived in a region monitored by the Surveillance, Epidemiology, and End Results (SEER) Program and compared them with matched controls who had no history of cancer drawn from the Medicare 5% sample. In both univariable and multivariable analyses, cancer survivorship was associated with an increased likelihood of not receiving recommended care across a broad range of chronic medical conditions (odds ratio, 1.19, 95% confidence interval, 1.12-1.27). For example, colorectal carcinoma survivors were less likely than controls to receive appropriate follow-up for heart failure, necessary diabetic care, or recommended preventive services. Having both primary care physicians and oncologists involved in follow-up appeared to ameliorate this effect significantly. African-American, poor, and elderly patients were less likely to receive necessary care in both groups. Whether it was due to patient factors, physician factors, or both, cancer survivors appear to be a vulnerable patient population, because their cancer diagnosis may shift attention away from important noncancer problems and providers. In addition, there may be lack of clarity around the relative roles primary care and specialist physicians will play in a survivor's care. Special attention and education are needed to ensure that survivors receive optimal medical services.     

Sexual function and experience among long-term survivors of childhood cancer

Aim

The objective was to compare sexual function, sexual experience and quality of partner relationship by gender in a cohort of long-term survivors of childhood cancer with a sample from the general population.

Methods

A 30-item self-reported postal questionnaire was completed by a cohort of 224 (64%) long-term survivors of childhood cancer and 283 (51%) randomly selected persons from the general population.

Results

Male survivors more often reported periods of low sexual interest (p = 0.019), more frequently reported low sexual satisfaction (p = 0.015), less frequently reported feeling sexually attractive (p = 0.020) and reported a lower total number of sexual partners (p = 0.031) than males in the comparison group did. Males diagnosed with a central nervous system (CNS) tumour more frequently reported sexual arousal problems (p = 0.003), low sexual satisfaction (p = 0.021) and total number of sexual partners (p = 0.012) than did males with other diagnoses. There were no statistically significant differences regarding sexual function between the female survivors and the females in the comparison group.

Conclusion

: The results indicate that cancer disease and treatment have more impact on sexual function of male survivors than on the sexual function of female survivors. Amongst the survivors, males diagnosed with CNS tumours were shown to be the most vulnerable group. Assessment of sexual function is recommended to be included in regular follow-ups after childhood cancer.     

A survey among oncologists on measures needed to improve cancer care

BACKGROUND: There is a continuous need for optimizing cancer care in Europe and globally. We aimed to apprehend the perception of (mainly medical) oncologists with regards to the importance of measures intended to improve the standard of cancer care. METHODS: Oncologists attending the 29th ESMO (European Society of Medical Oncology) congress were invited to respond to a rated (1-5) questionnaire addressing the following issues: research; medical training and education; funding; supportive therapy; interdisciplinary cooperation; structure of care; patient information and empowerment. RESULTS: 327 oncologists (median age: 43 years (23-80), 63.6% males) from 55 countries (77.7% European) responded. Academic research was considered the most important issue, followed by medical training and education, and interdisciplinary cooperation. Low ratings were given to the type of medical background of the caregiver and to the preferred treatment setting. The most highly rated single measures (on a scale of 0-100) were: more funding for clinical research by governments (100); more research by academic institutions (98.97); and better international cooperation in clinical studies (98.58). On the lowest end of priorities were: inclusion of alternative medicine into treatment plans (0); and cancer treatment provided by disease specialists only (15.14). CONCLUSION: Oncologists consider increased academic research and enhanced international cooperation as the most important prerequisites to cancer care improvement.     

Incidence of second primary tumours among childhood cancer survivors

Among a cohort of 10,106 three-year survivors of childhood cancer, 90 second primary tumours (SPTs) were observed. Within 25 years of 3-year survival about 4% developed a SPT, about 6-fold expected, the relative risk not varying much with increasing follow-up. Following genetic retinoblastoma we observed 30-fold the expected number of SPTs, and over 400-fold the expected number of osteosarcomas. The risk of SPT in the absence of radiotherapy and chemotherapy (inherent risk) following genetic retinoblastoma was 13-fold expected and over 200-fold the expected number of osteosarcomas were observed. There was evidence that both radiotherapy and cyclophosphamide were associated with an increased risk of SPT. After all first primary tumours (FPTs) excluding retinoblastoma we observed almost 5-fold the expected number of SPTs. The inherent risk was 4-fold expected, the relative risks associated with radiotherapy but no chemotherapy, and both radiotherapy and chemotherapy were 6- and 9-fold expected respectively. There were about 20-fold the number of malignant bone tumours expected, most were osteosarcoma; also 7-fold the number of central nervous system tumours expected. There were 8 basal cell carcinomas and it seems likely that radiotherapy was involved in the development of some of these. Radiotherapy appears to have been involved in the development of many of the SPTs observed following all FPTs excluding retinoblastoma, particularly after CNS tumours, Wilms' tumour and Hodgkin's disease. Currently there is insufficient follow-up to examine the risk following chemotherapy. After acute leukaemia there was 20-fold the expected number of central nervous system tumours, though this is based on only 3 cases; whether therapy is directly involved in their development is uncertain. The risks we report are rarely greater than those reported in previous large-scale studies; in most instances they are substantially less. It is very unlikely that many SPTs were missed with our follow-up system so alternative explanations require further investigation; in particular it is possible the lower risks in our data compared to series treated in the United States may be explained, in part, by less combination therapy and lower doses of radiotherapy.     

Communication between primary care physicians and radiation oncologists regarding patients with cancer treated with palliative radiotherapy.

PURPOSE: The purpose of this study was to assess the satisfaction and information needs of primary care physicians (PCPs) regarding communication with radiation oncologists (ROs), with respect to patients who receive palliative radiotherapy (RT). A selected objective was to evaluate the agreement between PCPs' expectations and the content of the RO letter sent after completion of RT. PCPs' knowledge of the role of palliative RT and their awareness of available patient support services were also determined. METHODS: The PCPs of patients discharged from the Cross Cancer Institute after receiving palliative RT were surveyed using a mail-out questionnaire. Questions regarding communication, RT knowledge, and awareness of support services were asked. The corresponding RO letter was reviewed. RESULTS: A total of 148 PCPs were identified and were mailed questionnaires, with 114 (77%) responding. Overall, 80% (87 of 109) of PCPs found the RO letter to be useful in patient management. However, there was poor (< 53%) agreement between PCPs' expectations and the actual content of the RO letter. Knowledge of the indications and effectiveness of palliative RT was limited, with PCPs obtaining a median score of 4 of a possible 8. Only 27% (31 of 114) of PCPs were aware of all five of the patient support services listed. CONCLUSION: Results show that although the majority of PCPs found the RO letter useful, they believed that the letter lacked important information while containing unnecessary details. Communication between PCPs and ROs needs improvement, especially considering that PCPs seem to have limited knowledge of palliative RT.     

Second primary tumours among survivors of childhood cancer treated with anticancer drugs

Increasing attention is being given to the occurrence of second primary tumours among survivors of childhood cancer. Our aims are to examine the risk of a subsequent primary, particularly in relation to chemotherapy, in a well-defined cohort; and to examine interesting associations between first and second primary tumours in relation to therapy generally and chemotherapy in particular among a less well-defined group of cases developing at least two primary tumours. There is suggestive evidence from our data that chemotherapy is involved either directly or indirectly in the development of secondary leukaemia, and this confirms previous work. Our data, although based on small numbers, indicate consistent evidence of an association between cyclophosphamide and an increased risk of a second primary tumour following retinoblastoma; this may be due to cyclophosphamide, radiotherapy or an interaction between the two. Two cases of uterine cancer were observed among three patients given oestrogen replacement therapy.     

The association between patient experience and healthcare outcomes using SEER-CAHPS patient experience and outcomes among cancer survivors

ObjectiveTo understand the relationship between patient experience, as measured by scores on the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) survey, and clinical and financial outcomes among older cancer survivors.Materials and MethodsWe analyzed the records of all Fee-for-Service (FFS) Medicare beneficiaries 66 years and older who completed one CAHPS survey from 2001 to 2004 or 2007–2013 with one of the five following cancer types: breast, bladder, colorectal, lung, or prostate; and completed a CAHPS survey within 5 years of cancer diagnosis date. We conducted a multivariate analysis, controlling for clinical and demographic variables, to evaluate the association between excellent CAHPS scores and the following clinical and financial outcomes: mortality, emergency department visits, and total healthcare expenditures.ResultsA total of 7395 individuals were present in our cohort, with 57% being male and 85.7% non-Hispanic White. Breakdown of the cohort by cancer site is as follows: prostate (40.4%), breast (28.6%), colorectal (14.0%), lung (9.4%), and bladder (7.6%). When looking at the relationship between CAHPS scores and clinical outcomes, there was no significant difference between excellent and non-excellent CAHPS score respondents in all three of the clinical outcomes studied. Furthermore, there was no association between ED utilization and patient experience scores when stratifying by cancer site and race/ethnicity among this cohort.ConclusionIn this cohort, a highly rated patient experience, as measured by responses on the CAHPS survey, is not associated with improved clinical outcomes among older cancer survivors.     

Perceptions and practice patterns of cancer survivorship care among Japanese gynecologic oncologists: The JGOG questionnaire survey

ObjectiveThis study aimed to assess gynecologic oncologists (GOs)’ perceptions and attitudes toward cancer survivorship to help improve survivor care.MethodsWe conducted a web-based questionnaire survey about survivorship issues for the GOs belonging to the Japan Gynecologic Oncology Group. We analyzed the proactiveness of the participants toward addressing 25 survivor issues. In addition, the practice patterns and barriers to care for survivors’ long-term health issues, such as second primary cancer (SPC) and lifestyle-related diseases (LSRD), and return-to-work (RTW) support were assessed.ResultsWe received 313 responses. The respondents had a mean of 22 years of physician experience. The ratio of men to women was approximately 7:3, and 84.7% worked at facilities for multidisciplinary cancer treatment. The respondents’ proactiveness for addressing psychosocial problems was significantly lower than physical and gynecological issues (p<0.01 by χ² test). However, most GOs tried to contribute to such issues according to patients’ demands. Women GOs were more proactively involved in some survivorship issues than the men (p<0.05 by logistic regression analysis). The rates of the respondents who proactively discussed SPC, LSRD, and RTW were unexpectedly high (60.7%, 36.1%, and 52.4%, respectively). However, the GOs only provided verbal support for these issues in many cases.ConclusionThe Japanese GOs were enthusiastic about survivorship care. However, their tendency to deal with survivors’ problems through their own knowledge and judgments raises concerns about the quality of care. Therefore, creating survivorship care guidelines and enhancing multidisciplinary collaboration should be prioritized.