Developing psychosocial aftercare for children surviving cancer and their families.

More children than ever are surviving childhood cancer. However, the medical and psychosocial consequences of their longer survival are becoming clear for former patients and their families, underlining the need for aftercare. Whereas the need for medical follow-up programs is widely recognized, psychosocial aftercare is still in its infancy. This paper presents a systematic approach to developing psychosocial aftercare based on evidence from research studies. First, the family member most in need of aftercare is identified. Research findings indicate that the child surviving cancer is most seriously affected by the cancer experience, followed by mothers and fathers, whereas siblings are least affected. Accordingly, former patients and parents should be the primary target groups. Second, different types of interventions need to be developed based on the nature of the problems of the target groups and the individual's level of adjustment. Finally, psychosocial aftercare programs need to demonstrate their effectiveness in reducing late effects and improving the quality of life after treatment ends. If our aim is to cure the child truly of cancer, than the development of psychosocial aftercare, its clinical application, and evaluation of its effectiveness will be the challenge for paediatric psycho-oncology in years to come.

Improving the quality of life for children with cancer. European School of Oncology Advisory Group.

There are now more than one million new cases of cancer every year in the European Community (EC) including the children to whom particular needs should be addressed. Besides the disease-free survival other outcomes reflecting the impact of treatment on the patient and their families must also be assessed and include their physical, psychological and social functioning throughout their care: during therapy, after completion of treatment or, for some, in the terminal phase of their illness. To provide optimal care and thus improve the quality of life for these children needs: a) an appropriately structured Paediatric Cancer Unit; b) well trained and permanent staff members: comprising doctors, nurses, psychologists, social workers and other health care professionals; c) facilities such as a specific out-patient clinic, a hospital school, a residence for parents; d) a well defined programme for the terminally ill children; e) a well defined programme for controlling the late effects of therapy.

Guidelines for assistance to terminally ill children with cancer: a report of the SIOP Working Committee on psychosocial issues in pediatric oncology.

This, the sixth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology, develops another important and especially difficult topic: assistance for terminally ill children with cancer. This is provided for the pediatric oncology community as a useful set of guidelines. It should be always possible for a declining child to die without unnecessary physical pain, fear, or anxiety. It is essential that he or she receive adequate medical, spiritual, and psychological support, and that the child at no point feels abandoned. Palliative care, in the terminal phase of cancer, should be tailored to the different needs and desires of the child and the family, with the goal of providing the best possible quality of life for the days that remain.

Experiences of parents of childhood cancer survivors: a qualitative analysis.

As the prognosis of childhood cancer improves, so does concern for the quality of survival. Because childhood cancer affects the entire family, insight is needed into the late consequences for parents and how they cope with it. For this purpose, a qualitative research method was used because this method enables a description of what it is like to live through childhood cancer in all its aspects. Parents whose child survived cancer were interviewed in depth about the late consequences of the disease. To maximize contrast in parental experience and in coping with the disease, variational sampling was used. Results indicated that parents experienced changes of a definitive and long-lasting nature as a result of cancer in their child. In spite of the child's survival, feelings of loss and perseveration of problems prevailed. To cope with late sequelae, characteristic strategies were identified including the position parents adopt a life or death perspective on the final outcome of the disease, the extent to which they express emotions, and the use of family planning and parenting behavior. Coping strategies used had not only an effect on the individual parent but also on the other family members. Parents who used coping strategies in a non-extreme way appeared to be functioning well. Implications for patient care and research are discussed.

Guidelines for a therapeutic alliance between families and staff: a report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology.

This, the fifth official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, develops another important topic: the Therapeutic Alliance between families and staff. This is addressed to the Pediatric Oncology Community as Guidelines that could be followed. Every parent, medical staff member, and psychosocial professional involved in the care of the child should be responsible for cooperating in the child's best interest. Everyone must work together toward the common goal of curing the cancer and minimizing its medical and psychosocial side-effects.

Information booklet for parents of children surviving cancer.

With increasing survival rates in pediatric oncology, the medical and psychosocial costs of cure are becoming apparent for the child and his family. The focus of our concern is now how to prevent and to reduce these adverse late effects of cancer and its treatment. To reduce the late psychosocial consequences for the child and its family a booklet was written for parents. We decided to address parents because of the young age of many children when treatment is completed, the essential role of parents in alleviating late effects for the child and his siblings, and the possibility to discuss the whole range of psychosocial late effects: those for the patient, the siblings, and for the parents themselves. The booklet acknowledges the specific emotional problems in patients, parents, and siblings that results from surviving childhood cancer and provides information and support on how to deal with them. The booklet can enhance open communication with the health care team about late consequences. In this way the booklet supports the further integration of medical and psychosocial aftercare.

Cranial irradiation is the major cause of learning problems in children treated for leukemia and lymphoma: a comparative study.

Prophylactic treatment of the central nervous system (CNS) in childhood leukemia and non-Hodgkin lymphoma (NHL) has negative effects on intelligence. We investigated the clinical significance of this finding by comparing the effect of different types of CNS prophylaxis on the survivor's learning capabilities. To isolate the effect of different types of CNS prophylaxis from other treatment and disease variables on learning problems, children treated for leukemia or NHL who received CNS prophylaxis with cranial irradiation (n = 30) or without cranial irradiation (n = 36) were compared with children treated for solid tumors who received systemic chemotherapy without any CNS treatment (n = 30) and with matched healthy controls (n = 265). The identification of learning problems was based on the school system's assessment. Parents and teachers reported on the child's educational status in a standardized way. Learning problems were found in 80% of children who received CNS prophylaxis with cranial irradiation. This was significantly higher than the 14% found in children treated with CNS prophylaxis without cranial irradiation (P < 0.000). The prevalence of learning problems in this latter group did not differ significantly from that in childhood cancer survivors without any form of CNS prophylaxis (20%) and in healthy matched controls (17%). We conclude that the high prevalence of learning problems in survivors of childhood leukemia and NHL is directly related to CNS prophylaxis with cranial irradiation and not to CNS prophylaxis per se or to other treatment and disease variables.

SIOP Working Committee on Psychosocial issues in pediatric oncology: guidelines for care of long-term survivors.

This is the third official document of the SIOP Working Committee on Psychosocial issues in pediatric oncology constituted in 1991. This document develops another topic already discussed and approved by the SIOP committee. The topic: "Care of long-term survivors" is addressed to the pediatric oncology community as guidelines that could be followed for considering this issue in a more appropriate way.

Self-concept before and after two years of growth hormone treatment in intrauterine growth-retarded children.

The objective of this study was to assess self-concept in children with short stature after intrauterine growth retardation (IUGR), before and after 2 years of growth hormone (hGH) treatment. We assessed 25 children before treatment, and 40 children after a 2-year treatment period. Seventeen of the 25 children of whom we had pretreatment data, were reassessed after 2 years of hGH treatment. All children had a birth length below the 3rd percentile, and did not show catch-up growth (current height < P3). We compared the self-concept measures (Self-Perception Profile for Children; SPPC) of the IUGR group with similar measures of a Dutch school sample. Four of the six SPPC mean scale scores of the IUGR group prior to treatment were significantly lower than mean scores of the school sample. Mean-scale scores of the group children, assessed after 2 years of hGH treatment, did not differ significantly from those of the school sample. In the group of 17 children who were assessed before as well as after 2 years of treatment, the mean scale scores of 'social acceptance' and 'general self-worth' were significantly higher at the second assessment (t = -5.93, p < 0.001 and t = -4.36, p < 0.001, respectively). From the present study we can hypothesize that short stature after IUGR and a low self-concept are related.

Siblings of childhood cancer survivors: how does this "forgotten" group of children adjust after cessation of successful cancer treatment?

Siblings of childhood cancer patients are labelled the "forgotten children" because they experience significant psychosocial distress and are isolated from support systems inside and outside the family. This study investigates the late consequences of the cancer experience for siblings. 60 siblings of cancer survivors were compared with control subjects on measures of psychosocial adjustment. No differences were found between siblings of cancer survivors and controls on emotional and behavioural problems and competence, suggesting that siblings adjust well to the period after cessation of treatment. The effect of demographic, family and disease-related characteristics on the siblings' psychosocial adjustment was limited. Whereas during treatment many psychosocial problems for siblings have been reported, this does not result in a heightened risk of psychological disturbance for siblings as a late effect. The implications for patient care are discussed.

Late psychosocial consequences for parents of children who survived cancer.

Investigated late psychosocial sequelae in 133 parents of children who survived cancer, using questionnaires developed to measure the specific impact of the disease. Childhood cancer had distinct and persistent late psychosocial effects on parents of survivors. Uncertainty and loneliness were the most reported problems. Demographic and situational characteristics such as being a mother, low SES, no religious affiliation, chronic disease in a family member other than the child surviving cancer, and concurrent stresses increased the risk of reporting late problems. Treatment itself had little or no effect on reported problems. However, when treatment led to long-term sequelae in the child, a significant and specific effect on parental problems was observed. No decline of problems over time was found, which has implications for patient care.

Obesity after successful treatment of acute lymphoblastic leukemia in childhood.

Early and late effects of treatment for acute lymphoblastic leukemia (ALL) on weight was retrospectively investigated in 113 children in continuous first remission. Weight was examined at diagnosis up to 10 y after cessation of treatment. There was an increased prevalence of overweight after treatment for ALL which persisted over time. All treatment regimens included corticosteroid therapy, and 52 patients received additional cranial irradiation. Patients treated with and without cranial irradiation did not differ in weight gain, indicating that not cranial irradiation but corticosteroid therapy might explain weight gain in children treated for ALL. Dexamethasone was associated with a significant increase of weight at cessation of treatment. Patients treated with a combination of prednisone and dexamethasone had as a late effect the highest prevalence of obesity (44%). Gender or age at diagnosis were not related to weight gain.

Impact of childhood leukemia on family planning.

Clinical experiences have indicated that family planning is affected by childhood leukemia. To investigate this issue, 130 mothers and fathers of 68 families with a long-term disease-free survivor were studied using interviews and questionnaires concerning the effects of childhood cancer on family planning. In one third of the families, either one or both partners reported that their child's disease affected their reproductive planning in various ways. The most extreme variations included having completed the family before diagnosis but still having another child versus not having completed the family before diagnosis but refraining from further progeny. More than half of the affected families refrained from having further offspring, delineating psychological motives for their decision. For parents whose family planning is affected by their experiences with childhood leukemia, the decision-making process is an extra burden. Therefore we advocate that support for the parents of a child with cancer should include counseling on progeny, in which both genetic and psychological information should be provided.

Association of 1800 cGy cranial irradiation with intellectual function in children with acute lymphoblastic leukaemia. ISPACC. International Study Group on Psychosocial Aspects of Childhood Cancer.

Cranial radiation therapy in childhood acute lymphoblastic leukaemia has been associated with adverse neuropsychological effects, such as low intelligence. However, records show that these associations usually occur when the dose of radiation used is 2400 cGy. We investigated whether a lower dose of 1800 cGy had the same adverse effects on long-term survivors and whether high doses of methotrexate but no radiation therapy would have a more beneficial effect. We evaluated 203 children for six years in a multi-centre European study. The patients were divided into two groups: 129 children treated with 1800 cGy of cranial radiation therapy and 74 children who received high-dose methotrexate but no radiation therapy. We used full scale intelligence quotient, verbal, and performance IQ tests to assess the patient's intelligence. We found a significant decline in full scale intelligence quotient in the irradiated group that increased with the length of time from diagnosis. Younger age at diagnosis was associated with lower full scale intelligence quotient in the radiated group. Our results indicate that a radiation dose of 1800 cGy can have negative effects on neurocognitive function and we continue to question the benefit of low-dose cranial radiation therapy.

[Late sequelae of leukemia in childhood: psychosocial aspects]. / Late gevolgen van leukemie op de kinderleeftijd: psychosociale aspecten.

As more children are now being cured of cancer, the physical and psychosocial consequences of cancer and its treatment become increasingly important issues for the pediatric cancer survivor. Information is accumulating on the sequelae of childhood cancer, especially on the medical side-effects of cancer treatment. Although considerably less information is available on the psychosocial adaptation of the long-term survivor, existing studies reveal that cancer survivors are at risk of developing adjustment problems. Until now no study has addressed the psychosocial functioning of the family of the long-term survivor. Preliminary results of our recent pilot study on this issue indicate that parents as well as siblings can experience ongoing problems in coping with the cancer experience.

Psychosocial aspects of childhood cancer: a review of the literature.

The literature concerning the psychosocial aspects of childhood cancer is reviewed. The emphasis of the literature is on the impact of the disease on the child and family and depicts the life-situation when faced with childhood cancer and responses to the disease. The literature strongly indicates that families experience serious difficulties and are a population at risk of developing psychosocial problems. The approach of studying the child with cancer and family is discussed and suggestions are made for future research.