Diana Greenfield

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.

Risk Factors for Vertebral and Nonvertebral Fracture Over 10 Years: A Population‐Based Study in Women

Risk factors may vary for different types of fracture, in particular for vertebral fractures. We followed 367 women >50 yr of age from a population‐based cohort for up to 10 yr. Factors that predicted vertebral rather than nonvertebral fractures related to physical weakness, poor health, and weight loss. Similar factors were also associated with greater bone loss at the hip.

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.

Quality of life, self-esteem, fatigue, and sexual function in young men after cancer: a controlled cross-sectional study.

Androgen deficiency is increasingly recognized in young male cancer survivors; however, its impact on quality of life (QOL) is not established. The authors investigated the relationship between androgen levels, QOL, self‐esteem, fatigue, and sexual function in young male cancer survivors compared with control subjects.

Living with advanced but stable multiple myeloma: a study of the symptom burden and cumulative effects of disease and intensive (hematopoietic stem cell transplant-based) treatment on health-related quality of life.

CONTEXT The cumulative impact of disease and treatment-related factors on health-related quality of life (HRQoL) in long-term survivors of multiple myeloma is poorly characterized. OBJECTIVES To characterize HRQoL and symptom burden in advanced, intensively treated myeloma. METHODS We performed detailed assessments in patients who had undergone hematopoietic stem cell transplantation and subsequent treatment for at least one episode of progressive disease. To exclude the impact of active disease and acute toxicity of treatment, patients were in a stable plateau phase. Patients were assessed for HRQoL (Short Form-12, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30, and Multiple Myeloma Module), pain (Brief Pain Inventory-Short Form), peripheral neuropathy (self-report Leeds Assessment of Neuropathic Symptoms and Signs), and concerns (adapted from Profile of Concerns). Serum interleukin-6 and tumor necrosis factor-alpha were measured. RESULTS A total of 32 patients were enrolled, with a median age of 55 years at diagnosis and 60 years at assessment. After a median 5.5 years from diagnosis and three lines of treatment, physical functioning was significantly compromised (P<0.001) and associated with progressive work disability and concerns regarding loss of independence. Fatigue and pain were the predominant symptoms, impacting negatively on physical functioning (P<0.001). Pain was predominantly neuropathic in half the patients. Serum interleukin-6 levels positively correlated with pain (P=0.03), pain interference (P=0.003), insomnia (P=0.02), and appetite loss (P=0.02), and inversely correlated with physical functioning (P=0.03). CONCLUSION Despite disease control and supportive care, intensively treated long-term myeloma survivors have significantly compromised HRQoL related to symptom burden. Systematic assessment is routinely indicated in advanced phase myeloma, even when disease activity is stable. Further studies should investigate the utility of interventional strategies and the relationship of cytokines with symptoms.

Follow-up care after childhood cancer: Survivors' expectations and preferences for care

AIMS To describe (1) self-rated quality of life, late effects and perceived future vulnerability, (2) expectations before a follow-up appointment, subsequent satisfaction and preferences for different models of care and (3) differences between survivors in quality of life, perceived late effects, vulnerability, expectations regarding follow-up, information needs (topics they want to and did discuss) and preferences for different models of care depending on risk stratification among childhood cancer survivors. METHOD One hundred and twelve of 141 survivors (18-45 years), diagnosed before 16 years and >5 years since diagnosis completed questionnaires before and after a follow-up appointment (or an abridged questionnaire if they did not attend an appointment within the study period). We collected data on physical (physical component score [PCS]) and mental (mental component score [MCS]) quality of life, late effects, future vulnerability and expectations about care (clinical: identification of late effects; supportive: employment, relationships). Medical information was extracted from case notes. RESULTS MCS and PCS were comparable to population norms, but 55.5% of survivors reported > or =1 late effect (range 1-9). Clinical care was rated more highly than supportive care (p<0.001) especially in those with worse PCS (p=0.042). Supportive care was rated highly by survivors who reported more late effects (p=0.040), higher future vulnerability (p<0.001) and lower MCS (p=0.005), and by women (p=0.014). Regardless of risk stratification, consultant-led follow-up was valued higher than other models (nurse-led care, GP-led care or postal/telephone follow-up, p<0.001). CONCLUSION Childhood cancer survivors are in favour of sustaining long-term follow-up care within the existing consultant-led model but this is not feasible given the increasing number of survivors. In the future we therefore need to develop alternative services which will provide the best medical care for each survivors needs.

Ovarian failure following cancer treatment: current management and quality of life

BACKGROUND There is a lack of evidence regarding current screening practices for incipient ovarian failure in young women following gonadotoxic therapy and the most appropriate form of estrogen replacement. This study examined the (i) prevalence and management of ovarian failure and (ii) quality-of-life implications of early menopause (EM). METHODS A medical case note audit for 288 women with a history of gonadotoxic therapy (aged 18-50 years) was conducted. Self-reported quality-of-life data were obtained from 178 (62%). RESULTS Ovarian screening was recorded in 44% of medical case notes, and ovarian failure was documented for 35%. From the self-reported data, 89/178 (50%) women reported experiencing an EM/ovarian failure. Worse menopausal symptoms were negatively associated with both sexual activity [pleasure (r = 0.29, P < 0.01), discomfort (r = 0.50, P < 0.001) and habit (r = 0.22, P < 0.05)] and general quality of life (P = 0.01). Hormone replacement therapy is the most commonly prescribed estrogen preparation; however, 34% of women with EM/ovarian failure reported not taking any replacement therapy. CONCLUSIONS Given the extent and impact of menopausal symptoms, further work is needed to establish systems for screening ovarian function and to determine appropriate and effective management of ovarian failure.

Metabolic Syndrome and Cardiovascular Disease after Hematopoietic Cell Transplantation: Screening and Preventive Practice Recommendations from the CIBMTR and EBMT

Metabolic syndrome (MetS) is a constellation of cardiovascular risk factors that increases the risk of cardiovascular disease, diabetes mellitus, and all cause mortality. Long-term survivors of hematopoietic cell transplantation (HCT) have a substantial risk of developing MetS and cardiovascular disease, with the estimated prevalence of MetS being 31–49% amongst HCT recipients. While MetS has not yet been proven to impact cardiovascular risk after HCT, an understanding of the incidence and risk factors for MetS in HCT recipients can provide the foundation to evaluate screening guidelines and develop interventions that may mitigate cardiovascular-related mortality. A working group was established through the Center for International Blood and Marrow Transplant Research and the European Group for Blood and Marrow Transplantation with the goal to review literature and recommend practices appropriate to HCT recipients. Here we deliver consensus recommendations to help clinicians provide screening and preventive care for MetS and cardiovascular disease among HCT recipients. All HCT survivors should be advised of the risks of MetS and encouraged to undergo recommended screening based on their predisposition and ongoing risk factors.

Satisfaction with follow‐up consultations among younger adults treated for cancer: the role of quality of life and psychological variables

Objective: Given increased survival rates and treatment‐related late effects, follow‐up for cancer survivors is increasingly recommended. However, information about adverse events (e.g. possibility of late effects) may be distressing for the cancer survivor and lead to poor clinic attendance. Survivor satisfaction with appointments and the information provided are important. The Monitoring Process Model provides a theoretical framework to understand how survivors cope with threatening information, and consequences for follow‐up care. Our aims were to describe satisfaction with routine follow‐up and association between monitoring/blunting and satisfaction with care.

Endocrine, metabolic, nutritional and body composition abnormalities are common in advanced intensively-treated (transplanted) multiple myeloma

Modern treatment strategies have increased life expectancy in multiple myeloma, but little is known about the endocrine, metabolic and nutritional status of long-term survivors. We performed endocrine, metabolic, bone, body composition and nutritional evaluations in 32 patients with intensively-treated, advanced but stable, myeloma a median duration of 6 years from diagnosis and three lines of intensive treatment, including at least one haematopoietic SCT procedure. All patients were off active treatment. There was a high prevalence of endocrine dysfunction: hypothyroidism (9%), hypogonadism (65% males) and elevated prolactin (19%). Adrenocortical function was preserved despite large cumulative corticosteroid pretreatment. Biochemical markers were consistent with postmenopausal status in all females and infertility in males. Nutritionally, 59% were vitamin D insufficient/deficient, reduced serum folate in 25% and vitamin B12 in 6%. Total body DEXA scanning confirmed ‘sarcopenic-obesity’ in 65%, but reduced bone density was seen in a minority. We conclude that potentially correctable endocrine, metabolic and nutritional abnormalities are prevalent in heavily-treated patients with stable multiple myeloma. Preservation of bone supports the efficacy of bisphosphonate treatment from diagnosis, but sarcopenic-obesity may contribute to frailty. Ultimately, multi-system screening and appropriate interventions may optimise quality of long-term survival and further studies are warranted.