Kate Absolom

Benefit finding in survivors of childhood cancer and their parents: further empirical support for the Benefit Finding Scale for Children.

BACKGROUNDnDiagnosis of a life-threatening condition has been linked to post-traumatic stress. However, only recently has it been acknowledged that positive outcomes including post-traumatic growth or benefit finding may also occur. The aim of our study was to extend previous work describing benefit finding among survivors of childhood cancer, by determining the contribution of demographic and medical variables and associations between child benefit finding and parent post-traumatic growth.nnnMETHODSnSurvivors of any child cancer (leukaemia, central nervous system or solid tumour; age 12-15 years; completed treatment >2 years) were recruited from routine follow-up clinics and asked to complete questionnaires [Benefit Finding Scale for Children (BFSC), quality of life (QOL), post-traumatic stress (PTS), illness perception and optimism]. Parents completed parallel measures to describe their own post-traumatic growth (PTG), QOL, PTS and illness perception.nnnRESULTSnForty-eight survivors and parents completed questionnaires (response rate: 81%). The BFSC showed good internal reliability (alpha = 0.91). Diagnosis of leukaemia, greater optimism and reports that the illness still affects their life today were associated with higher scores on the BFSC among survivors themselves. For parents, perceptions of how much the illness still affects them emotionally was associated with PTG. There was no association between childrens benefit finding and parents PTG.nnnCONCLUSIONSnThe BFSC is a useful and reliable instrument to assess positive outcomes after cancer in children. The extent to which survivors are optimistic and perceive on-going effects of the illness on their daily lives is significantly associated with the ability to find benefit after end of treatment.

The detection and management of emotional distress in cancer patients: the views of health‐care professionals

Objective: Emotional distress (ED) is an under‐diagnosed problem in cancer patients and over the last decade a number of national guidelines have recommended an assessment and management model based on appropriate health professional response to a hierarchy of patient need. This study explores the views of cancer professionals regarding their current roles and responsibilities in the detection and management of ED, use of screening tools and access to expert psychological support.

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.

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.

Training clinicians in how to use patient-reported outcome measures in routine clinical practice

IntroductionPatient-reported outcome measures (PROs) were originally developed for comparing groups of people in clinical trials and population studies, and the results were used to support treatment recommendations or inform health policy, but there was not direct benefit for the participants providing PROs data. However, as the experience in using those measures increased, it became obvious the clinical value in using individual patient PROs profiles in daily practice to identify/monitor symptoms, evaluate treatment outcomes and support shared decision-making. A key issue limiting successful implementation is clinicians’ lack of knowledge on how to effectively utilize PROs data in their clinical encounters.MethodsUsing a change management theoretical framework, this paper describes the development and implementation of three programs for training clinicians to effectively use PRO data in routine practice. The training programs are in three diverse clinical areas (adult oncology, lung transplant and paediatrics), in three countries with different healthcare systems, thus providing a rare opportunity to pull out common approaches whilst recognizing specific settings. For each program, we describe the clinical and organizational setting, the program planning and development, the content of the training session with supporting material, subsequent monitoring of PROs use and evidence of adoption. The common successful components and practical steps are identified, leading to discussion and future recommendations.ResultsThe results of the three training programs are described as the implementation. In the oncology program, PRO data have been developed and are currently evaluated; in the lung transplant program, PRO data are used in daily practice and the integration with electronic patient records is under development; and in the paediatric program, PRO data are fully implemented with around 7,600 consultations since the start of the implementation.ConclusionAdult learning programs teaching clinicians how to use and act on PROs in clinical practice are a key steps in supporting patient engagement and participation in shared decision-making. Researchers and clinicians from different clinical areas should collaborate to share ideas, develop guidelines and promote good practice in patient-centred care.

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

AIMSnTo 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.nnnMETHODnOne 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.nnnRESULTSnMCS 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).nnnCONCLUSIONnChildhood 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

BACKGROUNDnThere 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).nnnMETHODSnA 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%).nnnRESULTSnOvarian 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.nnnCONCLUSIONSnGiven 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.

Integrated care pathways for cancer survivors – a role for patient-reported outcome measures and health informatics

Abstract Modern cancer treatments have improved survival rates and changed the nature of cancer care. The acute and long-term physical and psychosocial comorbidities associated with treatment place increasing demands on healthcare services to provide suitable models of follow-up care for the survivor population. Aim. We discuss the value and challenges of incorporating patient-reported outcome measures (PROMs) and eHealth interventions into routine follow-up care. We draw on our 15 years’ experience of developing electronic systems for capturing patient-reported data in oncology settings, with particular reference to eRAPID a new online symptom reporting system for cancer patients. The redesign of healthcare pathways. New stratified care pathways have been proposed for cancer survivors with an emphasis on supported self-management and shared care. The potential role of PROMs in survivorship care pathways. PROMs can be used to evaluate rehabilitation services, provide epidemiological ‘Big Data’ and screen patients for physical and psychological morbidities to determine the need for further support. In addition, electronic PROMs systems linked to electronic patient records (EPRs) have the capability to provide tailored self-management advice to individual patients. Integration of PROMs into clinical practice. The successful clinical utilisation of PROMs is dependent on a number of components including; choosing appropriate questionnaires, developing evidence-based scoring algorithms, the creation of robust electronic platforms for recording and transferring data into EPRs, and training staff and patients to engage effectively with PROMs. Discussion. There is increasingly positive evidence for using PROMs and eHealth approaches to support cancer patients’ care during treatment. Much of what has been learnt can be applied to cancer survivorship. PROMs integrated into eHealth platforms and with EPR have the potential to play a valuable role in the development of appropriate and sustainable long-term follow-up models for cancer survivors.

Follow-up care for young adult survivors of cancer: lessons from pediatrics.

IntroductionRecent advances in treatment of childhood cancer have resulted in overall survival rates approaching 75%, but approximately two-thirds experience late-effects related to the disease or treatment. Consequently, recommendations for comprehensive follow-up have been made. As the number of survivors of adult cancers increase, similar concerns about how to provide follow-up and achieve optimal quality of life are being raised. In this paper we propose that management of cancer survivors diagnosed in young adulthood (18–45xa0years) could benefit from experience gained treating survivors of childhood cancer.Materials and methodsWe reviewed research relating to differences in survival rates and late-effects; current arrangements for follow-up; effectiveness; and problems in organization of follow-up separately for survivors of child and adult cancers.ResultsA number of models of follow-up were identified. Rationale for follow-up included early identification and treatment of second cancer and late-effects, health promotion and screening. Increasing numbers of survivors and range of late-effects were identified as problems in organizing services. A possible solution is risk-stratified follow-up, currently being developed in pediatrics.ConclusionsNew models of follow-up are needed that take account of financial costs for health services and survivors’ concerns about their current and future health. Implications for continuing refinement of treatment protocols must be an integral part of the service.Implications for cancer survivorsInternational standards are needed to ensure all survivors have access to expert follow-up care and can benefit from new information that might lead to earlier treatment of late-effects.

Need for psychological follow‐up among young adult survivors of childhood cancer

Follow-up is recommended for survivors of childhood cancer. Decisions about care tend to be made in terms of physical health, but psychological late effects including post-traumatic stress disorder (PTSD) and symptoms (PTSS) are prevalent. We report prevalence of PTSD/PTSS in a UK cohort, self-care and implications for organisation of follow-up. Eligible survivors (n= 218) under regular follow-up were invited to complete measures of PTSD, late effects and self-efficacy. Information about late effects was also taken from medical notes. A total of 118 survivors responded (54.1%) and 108 (49.5%) completed questionnaires. Prevalence of clinical PTSD (13.9%) was comparable with US findings. Female subjects and those who reported more late effects reported more PTSD. In regression analyses, number of survivor-reported late effects (but not number-recorded in medical notes) and PTSS predicted self-efficacy. Significant numbers of survivors report PTSS but this is unrelated to diagnosis or treatment. Female subjects and those who reported more physical late effects also reported more PTSS. Decisions to discharge survivors from routine care must consider psychological well-being as well as physical late effects. We recommend routine psychological screening for all survivors of childhood cancer and suggest this can be acceptable to survivors and feasible in clinic.