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.     

Follow-up care for cancer survivors: views of the younger adult

Background:

Since the launch of the National Cancer Survivorship Initiative, there has been a surge of interest surrounding the value and organisation of long-term follow-up care after cancer treatment. We report the views of 309 adult cancer survivors (aged 18–45 years) on provision of follow-up and preferences for care.

Methods:

A total of 207 survivors completed questionnaires before and after routine consultant-led follow-up appointments and 102 were recruited by post. Measures of health status (including late effects, perceived vulnerability to late effects and quality of life), reasons for attending follow-up (clinical and supportive), issues to be discussed at follow-up and preferences for different models of care were assessed.

Results:

In all, 59% of the survivors reported experiencing one or more cancer-related health problems. Survivors rated clinical reasons for attending follow-up more highly than supportive reasons (P<0.001), although nutritional advice and counselling were considered useful (60 and 47%, respectively). Those still receiving scheduled follow-up appointments did not discuss the range of issues intended with ‘late effects'' and ‘fertility'', which were particularly under-discussed. Hospital rather than GP follow-up was more highly rated.

Conclusion:

Survivors value the clinical reassurance currently provided by consultant-led care. However, supportive needs are not systematically addressed. Multi-disciplinary services are recommended to meet supportive needs in addition to clinical care.     

Oncologists’ perspectives on post‐cancer treatment communication and care coordination with primary care physicians

Post‐treatment cancer care is often fragmented and of suboptimal quality. We explored factors that may affect cancer survivors’ post‐treatment care coordination, including oncologists’ use of electronic technologies such as e‐mail and integrated electronic health records (EHRs) to communicate with primary care physicians (PCPs). We used data from a survey (357 respondents; participation rate 52.9%) conducted in 2012–2013 among medical oncologists caring for patients in a large US study of cancer care delivery and outcomes. Oncologists reported their frequency and mode of communication with PCPs, and role in providing post‐treatment care. Seventy‐five per cent said that they directly communicated with PCPs about post‐treatment status and care recommendations for all/most patients. Among those directly communicating with PCPs, 70% always/usually used written correspondence, while 36% always/usually used integrated EHRs; telephone and e‐mail were less used. Eighty per cent reported co‐managing with PCPs at least one post‐treatment general medical care need. In multivariate‐adjusted analyses, neither communication mode nor intensity were associated with co‐managing survivors’ care. Oncologists’ reliance on written correspondence to communicate with PCPs may be a barrier to care coordination. We discuss new research directions for enhancing communication and care coordination between oncologists and PCPs, and to better meet the needs of cancer survivors post‐treatment.     

Qualitative evaluation of care plans for Canadian breast and head-and-neck cancer survivors

Background

Survivorship care plans (scps) have been recommended as a way to ease the transition from active cancer treatment to follow-up care, to reduce uncertainty for survivors in the management of their ongoing health, and to improve continuity of care. The objective of the demonstration project reported here was to assess the value of scps for cancer survivors in western Canada.

Methods

The Alberta CancerBridges team developed, implemented, and evaluated scps for 36 breast and 21 head-and-neck cancer survivors. For the evaluation, we interviewed 12 of the survivors, 9 nurses who delivered the scps, and 3 family physicians who received the scps (n = 24 in total). We asked about satisfaction, usefulness, emotional impact, and communication value. We collected written feedback from the three groups about positive aspects of the scps and possible improvements (n = 85). We analyzed the combined data using qualitative thematic analysis.

Results

Survivors, nurses, and family physicians agreed that scps could ease the transition to survivorship partly by enhancing communication between survivors and care providers. Survivors appreciated the individualized attention and the comprehensiveness of the plans. They described positive emotional impacts, but wanted a way to ensure that their physicians received the scps. Nurses and physicians responded positively, but expressed concern about the time required to implement the plans. Suggestions for streamlining the process included providing survivors with scp templates in advance, auto-populating the templates for the nurses, and creating summary pages for physicians.

Conclusions

The results suggest ways in which scps could help to improve the transition to cancer survivorship and provide starting points for larger feasibility studies.     

Transition guidelines: An important step in the future care for childhood cancer survivors. A comprehensive definition as groundwork

Evidence-based clinical practice guidelines are essential to ensure that childhood cancer survivors at risk of chronic health conditions receive effective long-term follow-up care. However, adult survivors of childhood cancer are not always engaged in recommended health promotion and follow-up practices, as many centres do not have a formal transition programme that prepares survivors and their families for successful transfer from child-centred to adult-oriented healthcare. The need for a specific pan-European guideline for the transition of care for childhood cancer survivors has been recognised. The first step is to define the concept of transition of care for survivors of childhood cancer based on existing evidence.     

Views of family physicians about survivorship care plans to provide breast cancer follow-up care: exploration of results from a randomized controlled trial

Background

The U.S. Institute of Medicine recommends that cancer patients receive survivorship care plans, but evaluations to date have found little evidence of the effectiveness of such plans. We conducted a qualitative follow-on study to a randomized controlled trial (rct) to understand the experiences of family physicians using survivorship care plans to support the follow-up of breast cancer patients.

Methods

A subset of family physicians whose patients were enrolled in the parent rct in Ontario and Nova Scotia were eligible for this study. In interviews, the physicians discussed survivorship care plans (intervention) or usual discharge letters (control), and their confidence in providing follow-up cancer care.

Results

Of 123 eligible family physicians, 18 (10 intervention, 8 control) were interviewed. In general, physicians receiving a survivorship care plan found only the 1-page care record to be useful. Physicians who received only a discharge letter had variable views about the letter’s usefulness; several indicated that it lacked information about potential cancer- or treatment-related problems. Most physicians were comfortable providing care 3–5 years after diagnosis, but desired timely and informative communication with oncologists.

Conclusions

Although family physicians did not find extensive survivorship care plans useful, discharge letters might not be sufficiently comprehensive for follow-up breast cancer care. Effective strategies for two-way communication between family physicians and oncologists are still lacking.     

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.     

The Association between Survivorship Care Plans and Patient-Reported Satisfaction and Confidence with Follow-Up Cancer Care Provided by Primary Care Providers

Survivorship care plans aim to facilitate a smooth transition from tertiary to primary care settings after primary cancer treatment is completed. This study sought to identify the sociodemographic factors associated with receiving a survivorship care plan and examine the relationship between receiving a plan and confidence in follow-up care delivered by primary care providers. A cross-sectional analysis of the Canadian Partnership Against Cancer’s Experiences of Cancer Patients in Transition Study was conducted (n = 9970). Separate adjusted multinomial logistic regression models assessed the relationship between survivorship care plans and follow-up care outcomes. Proportion of survivors more likely to receive a survivorship care plan varied by numerous sociodemographic and medical factors, such as cancer type (colorectal and prostate), gender (male), and education (high school or less). In unadjusted and adjusted models, individuals who received a Survivorship Care Plan had significantly higher odds of: having felt their primary care providers were involved; agreeing that their primary care providers understood their needs, knew where to find supports and services, and were able to refer them directly to services; and were confident that their primary care provider could meet their follow-up care needs.     

Survivorship care plans in cancer: a systematic review of care plan outcomes

Background:

Eight years after the Institute of Medicine recommended survivorship care plans (SCPs) for all cancer survivors, this study systematically reviewed the evidence for their use.

Methods:

Studies evaluating outcomes after implementation of SCPs for cancer survivors were identified by searching databases (MEDLINE, EMBASE and Cochrane). Data were extracted and summarised.

Results:

Ten prospective studies (2286 survivors) met inclusion criteria (5 randomised controlled trials (RCTs)). Study populations included survivors of breast, gynaecological, colorectal and childhood cancer. Several models of SCP were evaluated (paper based/on-line, oncologist/nurse/primary-care physician-delivered and different templates). No significant effect of SCPs was found on survivor distress, satisfaction with care, cancer-care coordination or oncological outcomes in RCTs. Breast cancer survivors with SCPs were better able to correctly identify the clinician responsible for their follow-up care. One study suggested a positive impact on reducing unmet needs. Levels of survivor satisfaction with, and self-reported understanding of, their SCP were very high. Feasibility was raised by health professionals as a significant barrier, as SCPs took 1–4 h of their time to develop.

Conclusions:

Emerging evidence shows very few measurable benefits of SCPs. Survivors reported high levels of satisfaction with SCPs. Resource issues were identified as a significant barrier to implementation.     

An analysis of the cost of clinical surveillance after primary therapy for women with early stage invasive breast cancer

Summary Routine surveillance for distant metastases in women with early stage breast cancer has limited clinical utility and can result in large medical care costs. In order to estimate breast cancer surveillance costs, we used the results of a survey administered to a random sample of physician members of the American Society of Clinical Oncology. The survey measured the frequency in which radiographic and laboratory tests are ordered for postmenopausal women with stage I or II breast cancer after the completion of surgery and radiation or adjuvant chemotherapy if indicated. There were 209 completed surveys representing a response rate of 48%. The volume of tests ordered was expressed in terms of Medicare's relative value units (RVUs) and 1993 cost equivalents. The mean total RVUs over 5 years post-diagnosis was 43.8 (interquartile range 30.1–54.2) which represents a cost of $1369 using the 1993 Medicare conversion factor of $31.249. A cumulative logistic regression model categorized RVUs according to intensity of care (minimal, average, and intensive). While medical oncologists compared to surgeons and radiation oncologists, and physicians practicing in the Northeast and Midwest, compared to those practicing in the South and West, were more likely to adopt an intensive practice style, these differences were not statistically significant (p = 0.1). None of the other provider characteristics evaluated, including gender, prior experience, and practice type, had a significant effect on physician practice in a multivariate model. The data showed a wide variation among providers in surveillance practice patterns that was largely unexplained by physician demographics. These results are consistent with the physician practice style hypothesis which suggests that wide variations in treatment patterns result from uncertainty regarding effectiveness of care.     

Rising incidence of breast cancer among female cancer survivors: implications for surveillance

The number of female cancer survivors has been rising rapidly. We assessed the occurrence of breast cancer in these survivors over time. We computed incidence of primary breast cancer in two cohorts of female cancer survivors with a first diagnosis of cancer at ages 30+ in the periods 1975–1979 and 1990–1994. Cohorts were followed for 10 years through a population-based cancer registry. Over a period of 15 years, the incidence rate of breast cancer among female cancer survivors increased by 30% (age-standardised rate ratio (RR-adj): 1.30; 95% CI: 1.03–1.68). The increase was significant for non-breast cancer survivors (RR-adj: 1.41, 95% CI: 1.04–2.75). During the study period, the rate of second breast cancer stage II tripled (RR-adj: 3.10, 95% CI: 1.73–5.78). Non-breast cancer survivors had a significantly (P value=0.005) more unfavourable stage distribution (62% stage II and III) than breast cancer survivors (32% stage II and III). A marked rise in breast cancer incidence among female cancer survivors was observed. Research to optimise follow-up strategies for these women to detect breast cancer at an early stage is warranted.     

A qualitative investigation of breast cancer survivors’ experiences with breastfeeding

Introduction  This is an exploratory, qualitative investigation of breast cancer survivors’ experiences with breastfeeding. Previous studies have focused on the physiology of lactation after surgery and treatment, but have not explored factors influencing breastfeeding decisions and behavior. Methods  We used purposeful sampling to identify 11 breast cancer survivors who had a child after their diagnosis and treatment. Participants were recruited from among those in the Women’s Healthy Eating and Living (WHEL) study and a Young Survival Coalition (YSC) affiliate. We conducted semi-structured, open-ended telephone interviews lasting 45–75 min. We used social cognitive theory (SCT) to structure questions regarding influences on breastfeeding behavior. We transcribed interviews and used cross-case, inductive analysis to identify themes. Results  Ten of 11 participants initiated breastfeeding. The following main themes emerged: 1) Cautiously hopeful, 2) Exhausting to rely on one breast, 3) Motivated despite challenges, 4) Support and lack of support, and 5) Encouraging to others. Discussion/Conclusions  Study participants were highly motivated to breastfeed but faced considerable challenges. Participants described problems that are not unique to women with breast cancer, but experienced these to a much greater degree because they relied mostly or entirely on one lactating breast. This study revealed a need for improved access to information and support and greater sensitivity to the obstacles faced by breast cancer survivors. Implications for cancer survivors  Results of this qualitative analysis indicate that interventions to support the efforts of breast cancer survivors who are interested in breastfeeding are warranted. Additional research would aid in the development of such interventions.