Palliative care and catastrophic costs in Malawi after a diagnosis of advanced cancer: a prospective cohort study.

BACKGROUND: Inclusive universal health coverage requires access to quality health care without financial barriers. Receipt of palliative care after advanced cancer diagnosis might reduce household poverty, but evidence from low-income and middle-income settings is sparse. METHODS: In this prospective study, the primary objective was to investigate total household costs of cancer-related health care after a diagnosis of advanced cancer, with and without the receipt of palliative care. Households comprising patients and their unpaid family caregiver were recruited into a cohort study at Queen Elizabeth Central Hospital in Malawi, between Jan 16 and July 31, 2019. Costs of cancer-related health-care use (including palliative care) and health-related quality-of-life were recorded over 6 months. Regression analysis explored associations between receipt of palliative care and total household costs on health care as a proportion of household income. Catastrophic costs, defined as 20% or more of total household income, sale of assets and loans taken out (dissaving), and their association with palliative care were computed. FINDINGS: We recruited 150 households. At 6 months, data from 89 (59%) of 150 households were available, comprising 89 patients (median age 50 years, 79% female) and 64 caregivers (median age 40 years, 73% female). Patients in 55 (37%) of the 150 households died and six (4%) were lost to follow-up. 19 (21%) of 89 households received palliative care. Catastrophic costs were experienced by nine (47%) of 19 households who received palliative care versus 48 (69%) of 70 households who did not (relative risk 0·69, 95% CI 0·42 to 1·14, p=0·109). Palliative care was associated with substantially reduced dissaving (median US$11, IQR 0 to 30 vs $34, 14 to 75; p=0·005). The mean difference in total household costs on cancer-related health care with receipt of palliative care was -36% (95% CI -94 to 594; p=0·707). INTERPRETATION: Vulnerable households in low-income countries are subject to catastrophic health-related costs following a diagnosis of advanced cancer. Palliative care might result in reduced dissaving in these households. Further consideration of the economic benefits of palliative care is justified. FUNDING: Wellcome Trust; National Institute for Health Research; and EMMS International.

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.

Reassurance following breast screening recall for female survivors of Hodgkin's lymphoma.

Female survivors of Hodgkin's lymphoma (HL) treated with mantle radiotherapy experience increased breast cancer risk related to radiation dose and age at diagnosis. In 2003, the Department of Health (DoH) in the UK recalled patients to explain this risk and offer screening. The aims of this paper are to describe women's emotional responses and knowledge of their personal risk following the recall. Women were interviewed before risk counselling and breast screening (Time 1, n=56) and again following screening and results (Time 2, n=50). Questionnaire measures of quality of life, anxiety, depression and cancer worries were completed at Time 2. No cases of breast cancer were identified. After the recall, 64% had learned more about late effects and 76% were reassured about their health. All but one woman intended to attend future screening. Women are keen to take advantage of screening and experience relatively little distress.

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

INTRODUCTION: Recent 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 (18-45 years) could benefit from experience gained treating survivors of childhood cancer. MATERIALS AND METHODS: We 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. RESULTS: A 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. CONCLUSIONS: New 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 SURVIVORS: International 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.

Follow-up after childhood cancer: evaluation of a three-level model.

INTRODUCTION: Follow-up for cancer survivors is recommended to detect recurrence; monitor late-effects; record toxicity and provide care and education. We describe our experience with a three-level model developed to guide decisions about intensity and frequency of follow-up [Wallace WHB, Blacklay A, Eiser C, et al. Developing strategies for the long term follow-up of survivors of childhood cancer. BMJ 2001;323:271-274]. PROCEDURE: One hundred and ninety eight survivors (52% male) recruited over 12-months: (mean age=23.8 years, range=16-39 years; mean time since diagnosis=16.2 years, range 2.4-32.7 years) reported their number of symptoms and late-effects. Information was taken from the medical records to assign each survivor to the appropriate levels by six clinic staff independently. RESULTS: The survivors were assigned to level 1 (n=8), level 2 (n=97) and level 3 (n=93). There were seven cases of disagreement. Level 3 survivors self-reported more symptoms and late-effects than level 2 survivors. CONCLUSIONS: Coding was relatively simple for experienced clinic staff, although there were some disagreements for the survivors of ALL. The relationship between assigned level and self-reported symptoms and late-effects provides some evidence for validity of the model. We conclude that it is important to maintain flexibility to allow movement between levels for individual patients and that the default should always be to the higher level.

Predictors of clinic satisfaction among adult survivors of childhood cancer.

Childhood cancer survivors experience a wide range of late-effects. As survival rates improve, follow-up in paediatric clinics becomes less feasible, and alternative models of care have been proposed. In this study, satisfaction among those attending a traditional paediatric late-effects clinic was compared with a multi-disciplinary clinic in an adult setting. Survivors (adult clinic n=93, paediatric clinic n=105, age 16-39 years) completed measures of symptoms, understanding of vulnerability to late-effects, purpose of follow-up, satisfaction and number of topics discussed. Predictors of satisfaction were: number of topics discussed, greater understanding of the purpose of follow-up and sex. Females, and those reporting longer waiting time were less satisfied. Aspects of clinic organisation, including shorter waiting times and opportunities to discuss health concerns, are more important in determining patient satisfaction than clinic type. Survivors' understanding of the purpose of follow-up is also integral in determining satisfaction.

HRQOL implications of treatment with dexamethasone for children with acute lymphoblastic leukemia (ALL).

BACKGROUND: Dexamethasone is increasingly used as the steroid of choice in trials for standard risk children with acute lymphoblastic leukemia (ALL). Improvements in event-free survival (EFS) have been attributed to lower CNS relapse rates, However, there are concerns that dexamethasone may be more toxic than previous conventional therapy with prednisone. Such toxicity raises questions about the implications for child neuropsychological function and HRQOL. Patients participating in the UK ALL 99/01 trial were randomized to receive dexamethasone or prednisone as their steroid in induction and maintenance chemotherapy. We compared the HRQOL and behavior in children randomized to receive both these agents. PROCEDURE: Standardized questionnaires to assess parent and child HRQOL at 3-6 months after diagnosis (T1) and 1 year later (T2) completed by mothers in family homes. Forty-five mothers of a child with ALL (32 male, 13 female; average age at T1, 7 years 3 months; at T2, 8 years 3 months) completed HRQOL questionnaires. RESULTS: For the total group, child HRQOL scores improved and behavior problems decreased significantly from T1 to T2. Comparison of HRQOL scores between the 17 children randomized to dexamethasone and 28 children randomized to prednisone showed no significant differences. The rate of improvement in HRQOL from T1 to T2 did not differ between children randomized to dexamethasone or prednisone. CONCLUSIONS: Dexamethasone is increasingly used in the treatment of ALL and has been linked with improved survival rates. Long-term use of dexamethasone raises questions about neuropsychologic toxicity. Although HRQOL increased significantly over the year for all children, the extent of this increase did not differ by chemotherapy. These results should contribute to lessened concerns about use of dexamethasone in the treatment of ALL.

Follow-up care for childhood cancer survivors: a focus group analysis.

Follow-up of survivors of childhood cancer is recommended to improve detection of late-effects, and provide individuals with information and advice. This study aimed to follow-up survivors of childhood cancer and report on their attitudes to current follow-up methods. Twenty-six survivors (13-25 years) of childhood cancer and their parent(s) attended focus groups (n = 7) to discuss views about follow-up care. Transcripts were analysed using interpretative phenomenological analysis (IPA). Three themes were identified: strategies to achieve a normal life (through playing down possibility of late-effects or careful monitoring of health); expectations about follow-up (facts and information, advice about self-care, everyday living, and psychosocial consequences) and preferences for different models of care. Given that some families had reservations about the benefits of follow-up, it is important that services address survivors' interests and meet their expectations. Changes to service delivery must take account of individual needs and expectations. Possible limitations of focus group methods (recruitment, bias reduction, methods of analysis and influence of other participants' views) are discussed.

Parental communication and children's behaviour following diagnosis of childhood leukaemia.

Many parents find decisions about what to tell their child with cancer difficult. Open communication is generally considered the best policy and most health care professionals encourage parents to talk openly and honestly about the illness. However, parents differ in their views about what to tell the child. In this study 55 parents of children (36 boys and 19 girls, mean age = 7.33 years) newly diagnosed with acute lymphoblastic leukaemia (ALL) were interviewed about (i) the child's reactions and behaviour following diagnosis, (ii) their views about what to tell their child and (iii) factors influencing parents' communication with the child. Interviews were analysed using thematic analysis. Most children showed behavioural and mood difficulties after diagnosis. Older children were given more information. In addition, parents' perceptions of childhood cancer affect the way they communicate with their child. These findings may be used to inform training packages in order to facilitate improved communication amongst health professionals.

Health promotion for survivors of childhood cancer: a minimal intervention.

We report the evaluation of an information booklet aimed to explain the purpose of follow-up to survivors of childhood cancer. Evaluations drew on theoretical concepts in the elaboration likelihood and stages of change models. We predicted that survivors who adopt central rather than peripheral processing would show greater understanding and increased readiness to change health behaviour. Forty-eight survivors were shown an example page of the booklet in the clinic and then completed questionnaires about attitude to clinic, readiness to change behaviour, and the importance and scariness of the information. They were then given the whole booklet and asked to complete a second questionnaire at home. After reading the booklet, survivors reported a more positive attitude to clinic. Survivors using central processing rated information as more important and were more ready to change health behaviour than peripheral processors. We recommend that methods to encourage central processing should be routinely included when providing children with health information.

Long-term follow-up of survivors of childhood cancer in the UK.

BACKGROUND: Childhood cancer is rare, but there are now good survival prospects and in the UK approximately 1 in 1,000 young adults is a survivor of childhood cancer. There are many adverse health outcomes associated with the treatment of childhood cancer often arising several years after completion of treatment. The aim of this study was to quantify the long-term clinical follow-up practices concerning survivors of childhood cancer. PROCEDURE: A cross-sectional postal survey of 22 treatment centres of the United Kingdom Children's Cancer Study Group (UKCCSG) clinicians was carried out as well as a cross-sectional postal survey of general practitioners of most adult survivors of childhood cancer in Britain. RESULTS: Subsequent to 5 years after the end of treatment: 52% of UKCCSG clinicians follow-up all survivors for life, while 45% discharge some patients. Of those clinicians discharging: over 50% discharged benign, stage I or tumors treated with surgery alone, in contrast 16% reported discharging all or most patients; almost all (97%) clinicians discharged to a general practitioner. Only 14% of clinicians reported nurses undertook a specialist role. Sixty-five percent of the 10,979 general practitioners reported that their patient was not on regular hospital follow-up. CONCLUSIONS: There are wide variations in the extent to which survivors of childhood cancer are discharged from hospital follow-up. There is a need for regularly updated national guidelines concerning the levels of follow-up required for specific groups of survivors defined principally by the treatment they received.

Reproductive medicine in a late effects of cancer clinic.

This review discusses the most commonly observed problems in young people who have survived childhood cancer, with particular emphasis on the issues of fertility. It also describes the role of the late effects clinic in transitional care and the multidisciplinarity of the clinicians required to meet the needs of these young people. There is a need for evidence-based guidelines for management of long-term survivors.