Pediatric Nephrology
Pediatr Nephrol (1992) 6:459-463 9 IPNA 1992
Original article Psychosocial adaptation of children and adolescents with chronic renal failure Joachim Rosenkranz 1, Klaus-Eugen Bonzel 2, Monika Bulla 3, Dietrich Michalk 4, Gisela OffnerS, Evelyn Reichwald-Kluggerl, and Karl Sch~irerl Departments of Paediatric Nephrology of University Children's Hospitals of 1Heidelberg, 2 Essen, 3Mtinster, 4 Cologne, and 5 Hannover, Federal Republic of Germany Received August 7, 1991; received in revised form March 20, 1992; accepted April 3, 1992
Abstract. In a multicentre study comprising five paediatric nephrology centres in Western Germany, psychosocial and educational parameters were assessed (during 1987) in 479 children and adolescents with chronic renal failure (CRF) in order to gain insight into their psychosocial adaptation to the disease. At the time of assessment, 31% of patients were on conservative treatment, 14% on haemodialysis, 9% on continuous ambulatory peritoneal dialysis and 46% had a functioning transplant. The mean age at assessment was 13.6 years. Additional disabilities were noted in 29% of patients. School attendance of the 233 children of school age was in general satisfactory; 22% of patients attended schools for disabled or handicapped children. Vocational training was frequently inadequate, especially for dialysed patients, and only 14 of 53 adolescents over 16 years had graduated. Of 49 adult patients, only 21 were in some form of employment. A lack of age-appropriate independence was observed in a large proportion (86%) of patients over 17 years, who continued to live with their parents or other persons taking care of them, whilst only 14% were living alone or with a partner. We conclude that, despite improved survival, psychosociaI adaptation continues to be impaired in paediatric patients with CRF, especially in adolescents and those on dialysis.
Key words: Chronic renal failure - Psychosocial care Dialysis - Transplantation - Rehabilitation
Introduction In the last 20 years medical care and management of children undergoing renal replacement therapy (RRT) have greatly improved. As a result, the outcome for paediatric Correspondence to: J. Rosenkranz, Department of Paediatric Nephrology, University Children's Hospital, Im Neuenheimer Feld 150, W-6900 Heidelberg, Federal Republic of Germany
patients with progressive chronic renal failure (CRF), usually described in terms of mortality and morbidity, has significantly changed [1-4]. Some paediatric centres have also reported an improved prognosis for children with CRF in terms of their rehabilitation and ability to cope with everyday life [5-8]. The improvement is especially impressive when school attendance and attainment are compared with those described in the 1970s by the European Dialysis and Transplant Association (EDTA) [9]. The following investigation was initiated to obtain an overview of the state of rehabilitation of children and adolescents with CRF, including the preterminal stage of the disease. Five major paediatric nephrology centres located in the Federal Republic of Germany participated. All are actively involved in dialysis treatment and transplantation (TP). The survey was conducted with the aim of gaining insight into the actual way of life of paediatric patients with CRF, including those who have reached adulthood. The study underlines the importance of adequate educational opportunities, both in terms of psychosocial development and vocational training, as a key for independence in adult life.
Patients and methods The study included 479 paediatric patients with CRF (286 males, 193 females) from the five largest West German paediatric nephrology centres, located at the University Children' s Hospitals in Cologne, Essen, Hannover, Heidelberg and Mtinster. Patients were included if they were under the care of one of these centres from 1 January to 31 December, 1987, and had persistent serum creatinine levels above 1.2 mg/dl or had started RRT. Data were collected from two questionnaires sent to the five participating centres. The first questionnaire asked for details of the most relevant medical findings, including the primary renal disorder (coded according to the EDTA instruction sheet [10]), and the modes of treatment with corresponding dates and major complications from the disease or from therapy. The second questionnaire dealt with psychosocial factors and asked for nationality, place of residence, travelling time to the medical centre, school attendance, vocational training, occupation and marital status of patients, as well as the patient's dependence on persons taking care of them.
460 Table 1. Modes of treatment and age of patients on 31 December 1987 Mode of treatment
No. of patients
%
Conservative Haemodialysis CAPD Transplantation
150 66 44 219
31 14 9 46
All patients
479
100
Mean age (years)
_+SD
9.7", ** 16.8 9.6*. ** 16.2
5.8 4.1 6.5 4.8
13.7
6.2
* P
Pediatr Nephrol (1992) 6:459-463 9 IPNA 1992
Original article Psychosocial adaptation of children and adolescents with chronic renal failure Joachim Rosenkranz 1, Klaus-Eugen Bonzel 2, Monika Bulla 3, Dietrich Michalk 4, Gisela OffnerS, Evelyn Reichwald-Kluggerl, and Karl Sch~irerl Departments of Paediatric Nephrology of University Children's Hospitals of 1Heidelberg, 2 Essen, 3Mtinster, 4 Cologne, and 5 Hannover, Federal Republic of Germany Received August 7, 1991; received in revised form March 20, 1992; accepted April 3, 1992
Abstract. In a multicentre study comprising five paediatric nephrology centres in Western Germany, psychosocial and educational parameters were assessed (during 1987) in 479 children and adolescents with chronic renal failure (CRF) in order to gain insight into their psychosocial adaptation to the disease. At the time of assessment, 31% of patients were on conservative treatment, 14% on haemodialysis, 9% on continuous ambulatory peritoneal dialysis and 46% had a functioning transplant. The mean age at assessment was 13.6 years. Additional disabilities were noted in 29% of patients. School attendance of the 233 children of school age was in general satisfactory; 22% of patients attended schools for disabled or handicapped children. Vocational training was frequently inadequate, especially for dialysed patients, and only 14 of 53 adolescents over 16 years had graduated. Of 49 adult patients, only 21 were in some form of employment. A lack of age-appropriate independence was observed in a large proportion (86%) of patients over 17 years, who continued to live with their parents or other persons taking care of them, whilst only 14% were living alone or with a partner. We conclude that, despite improved survival, psychosociaI adaptation continues to be impaired in paediatric patients with CRF, especially in adolescents and those on dialysis.
Key words: Chronic renal failure - Psychosocial care Dialysis - Transplantation - Rehabilitation
Introduction In the last 20 years medical care and management of children undergoing renal replacement therapy (RRT) have greatly improved. As a result, the outcome for paediatric Correspondence to: J. Rosenkranz, Department of Paediatric Nephrology, University Children's Hospital, Im Neuenheimer Feld 150, W-6900 Heidelberg, Federal Republic of Germany
patients with progressive chronic renal failure (CRF), usually described in terms of mortality and morbidity, has significantly changed [1-4]. Some paediatric centres have also reported an improved prognosis for children with CRF in terms of their rehabilitation and ability to cope with everyday life [5-8]. The improvement is especially impressive when school attendance and attainment are compared with those described in the 1970s by the European Dialysis and Transplant Association (EDTA) [9]. The following investigation was initiated to obtain an overview of the state of rehabilitation of children and adolescents with CRF, including the preterminal stage of the disease. Five major paediatric nephrology centres located in the Federal Republic of Germany participated. All are actively involved in dialysis treatment and transplantation (TP). The survey was conducted with the aim of gaining insight into the actual way of life of paediatric patients with CRF, including those who have reached adulthood. The study underlines the importance of adequate educational opportunities, both in terms of psychosocial development and vocational training, as a key for independence in adult life.
Patients and methods The study included 479 paediatric patients with CRF (286 males, 193 females) from the five largest West German paediatric nephrology centres, located at the University Children' s Hospitals in Cologne, Essen, Hannover, Heidelberg and Mtinster. Patients were included if they were under the care of one of these centres from 1 January to 31 December, 1987, and had persistent serum creatinine levels above 1.2 mg/dl or had started RRT. Data were collected from two questionnaires sent to the five participating centres. The first questionnaire asked for details of the most relevant medical findings, including the primary renal disorder (coded according to the EDTA instruction sheet [10]), and the modes of treatment with corresponding dates and major complications from the disease or from therapy. The second questionnaire dealt with psychosocial factors and asked for nationality, place of residence, travelling time to the medical centre, school attendance, vocational training, occupation and marital status of patients, as well as the patient's dependence on persons taking care of them.
460 Table 1. Modes of treatment and age of patients on 31 December 1987 Mode of treatment
No. of patients
%
Conservative Haemodialysis CAPD Transplantation
150 66 44 219
31 14 9 46
All patients
479
100
Mean age (years)
_+SD
9.7", ** 16.8 9.6*. ** 16.2
5.8 4.1 6.5 4.8
13.7
6.2
* P
