Presentation of Mokhtar El Harras at conference in Montreal (Sept. 1999)

Traditionally, the population health level was measured by the mortality and morbidity rate. However, since recently, the use of concepts such as "quality of life" or "human development" becomes more and more frequent.
Quality of Life was defined as "the subjective evaluation of the patient of various aspects of his life in relation to his state of health."
Quality of life has been perceived differently in developed and underdeveloped societies: while in a wealthy country quality of life is related to comfort, in a poor country the comfort notion may be not existent or at least subordinate.

The quality of life of the patient and his family bay be influenced by:
· the announcement of the diagnosis
· hospital conditions
· pain resulting from the disease and the treatment 
· fear vis-á-vis the unknown
· interruption of the child's schooling
· anguish related to possible long term toxicity
· increase of displacement between home, work and the hospital
· parents' health deterioration
· parents' guilt feelings
· social isolation, or decrease of number of visits

These factors are reinforced by
· the high illiteracy rate of the mothers,
· the difficulty to distinguish between pain complaints and social complaints,
· in a few cases, the perception that the disease may result from "bad eye", "demon strike" or divine sanctions for sin that has been committed,
· lifestyle as characterized by pollution, stress, smoking, harmful food and poverty (Epstein: "The modern society gives the majority of the people a few opportunities to choose freely where to live, where to work, what air to breath, what water to drink, and what food to eat!")


Three preliminary observations:
1. A lot of patients are treated (300 new cases per year) with very few staff and material;
2. An important part of the "AVENIR" financial resources are dedicated to purchasing drugs.
3. The main goal of the treatment today is to enable children to have a life of a good quality, more than just to save their lives.

The seeking for the quality of life at all phases of the disease :
A) The diagnostic phase
1. The announcement of the diagnosis is adapted to each family and to each child, but is rarely made at the appropriate time;
2. The diagnostic investigations are practiced under different analgesic methods;
3. All these acts are explained to the child to prevent the unknown.

B) The therapeutic phase
The exposure to chemotherapy, radiotherapy, and surgery may alter the child life quality. Efforts are made to fight against the complications related to these therapeutic options :

1. The medical level:
Þ A better evaluation of the prognosis allows the doctor to adapt the intensity of the treatment to the child;
Þ Chemotherapy complications are prevented by strong analgesics;
Þ More effective and less toxic anti-emetics are used in cases of vomiting (but the most efficient are still very expensive)
Þ Therapeutic aplasia has become less dramatic since the utilization of strong antibiotics and hematopoetic growth factors;
Þ Pain resulting from the treatment and the disease itself is fought against by the use of various analgesic methods (morphine is relatively privileged). But the available drugs and methods are not appropriate for all children;
Þ Indications of childhood radiotherapy are limited. But when compulsory techniques are adapted and the doses are diminished and divided;
Þ Hair loss (alopecia) is rarely a problem for the Moroccan child. That is why the preventive methods, such as the refrigerant helmet, are not used;
Þ Long term toxicity such as cardiomyopathy and sterility are prevented by the omitting certain drugs or by changing the prescription modalities;
Þ Conservative surgery is often preferred to amputations or radical removal of organs.
Þ The therapeutic decision is made by the multidisciplinary team.
Þ When the amputation is necessary, the child is prepared psychologically. But some conservative techniques, particularly the most effective and expensive ones, are still not available.
Þ A fact that makes conservative surgery less frequent than in other treatment units. 
Þ Secondary cancers are prevented by information about risk factors (i.e. smoking), and omission of most critical medicines as well as by avoiding their association with radiotherapy whenever possible;
Þ When there is no hope for cure, a comfort treatment is prescribed to the child;

2. The socio-psychological level:
Psychological and affective complications are fought against by:
Þ Opening cancer wards to families (mothers are allowed to stay with their children in the hospital), school, animators, clowns, and volunteers;
Þ encouraging out-patients clinics, care at home and in the day hospital;
Þ Mobilizing family cooperation;
Þ Resorting to the very precious "Avenir" support (moral and material)

The Moroccan Association (AVENIR):
· provides residence and logistic means for families living far from the hospital;
· creates an atmosphere of psychological comfort and mutual support;
· constitutes a pressure group to advocate patients' and long term survivors' rights concerning education, health insurance and professional integration

Some children are put on a diet according to their alimentary preferences and dislikes. Their taste shifts resulting from the disease and oncologic treatment are also taken into consideration;

The sensitization of the pupils, as well as the school staff, in order to make them show more solidarity towards children affected by cancer;

The undertaking of attempts aimed at discharging some parents of guilt feelings;

Integration of medical / paramedical team on the one hand, and children and their families on the other hand, promoting relationships based on qualities and values such as love, smile, patience, listening, sacrifice, respect, dialogue and constant readiness to respond, inform and prevent and to strengthen parents resistance and optimism (I should recognize, as a father, that I experienced profoundly all these feelings with our doctors).

Reinforcement of solidarity ties between children and their families (parents home), as well as between all of them and the medical and paramedical team;

Emphasis on the pre-existent belief that the true believers are the most exposed to have a disease such as a cancer (in a way that the disease becomes a purification, a sign of faith, a kind of privilege which promotes man in the scale of faith);

Life quality, from the parents standpoint, is also strongly related to economic means, to the solidarity of the wider family and neighbors (the more family members visit the child, the more it is considered positive and valuable; the more visits are made at home and hospital, the more child parents feel better).

However, for some other families privacy is precious: the quality of life requires to keep the secret.

Conclusion:
Cancer in childhood is a distress that affects the life quality of the person as well as of the entire family;
The life quality has many dimensions : biological, social, economical, psychological, cultural, religious, political,

To face the deterioration of life quality in the case of childhood cancer requires the investment and the mobilization of all these dimensions; 
It is also requires to improve the quality of life of the society as a whole.