Content analysis
According to all the participants, the concept of HRQoL encompasses several aspects of life and is influenced by the environment in which we live (evaluation necessarily contextual: social, cultural, economical…). It is as a complex concept that can be limited to a consequence of one’s health. Although the definition of HRQoL was not clear according to the participants, a consensus emerged about the impact of health on various aspects of life, with particular importance assigned to family, social and school contexts. Parental evaluation of the HRQoL of children was deemed necessary (“Parents are the main judges of their children’s lives”) as assessment of the HRQoL of parents (“The QoL of a child can be good even if the QoL of his or her parents is not”). This finding does not exclude the value of caregivers’ assessments (“It is interesting to evaluate each person’s perception [parents, child, caregivers] to confront his/her opinions”). Because perceptions are inherently subjective, they can vary significantly; a neonatologist asked if a perception could be more valid than the other one and in which perception to trust. (“What is the truth?”).
Participants were confronted with the difficulty of HRQoL subjective and changing nature (i.e., that it is an adaptive process that changes as priorities change) (An intensive care physician said:“Patients with a handicap can have a good QoL at one time and a bad QoL at another period in their lives, but it is the same thing for everybody, with or without handicaps; it depends on children’s psychological evolution, their social integration, the consciousness that they have of their difficulties, their family situation…”).
One limitation reported by the participants was related to the interpretation of the quantitative values derived from the questionnaires, that asked the meanings of norms. Moreover, the FGs revealed an interest in conducting assessments measuring different dimensions of HRQoL (“We can imagine that a child who has a walking disorder is not satisfied because he cannot play for sports with his friends but at the same time, is able to play music, which would be better for him”).
Health-related quality of life seems to be a potential informational tool: along with other factors within the framework of prematurity, HRQoL adds an additional dimension to evaluations of the EPC, especially when parents ask for concrete information about the future of their child (A neonatologist said: “Parents want to know what they are waiting for with their child: How will they plan his/her school or educational life? Could he/she make friends? Could he/she play sports or engage in cultural activities? What relationships will he/she have with others? What will the duration of the disease be? How frequently will hospitalizations occur?”). According to some neonatologists and the two paediatric neurologists, health-related quality of life evaluation could improve communication among families, children and caregivers, helping families anticipate problems and understand why and in what situations HRQoL can decline.
Knowledge about HRQoL studies and about the tools used to measure HRQoL was not precise, even when participants (particularly neonatologists) said that the QoL concept was sometimes used among “ethical thinking staff” in perinatal units, when they have to discuss withdrawing therapy.
There were no differences by gender, age or seniority, but perspectives varied by specialty and type of practice. Physicians who cared for EPC only during the perinatal period (i,e., obstetricians and intensive care physicians) said they did not take HRQoL into account. According to them, this notion is too subjective, depending of many factors and too evolutive to be taken into account. The application of this notion in the emergency perinatal contexts cannot be supposed. Conversely, physicians who provided long-term follow-up care for EPC (i,e., neonatal physicians and paediatric neurologists) indicated that considering HRQoL was essential, at the same time to improve the relation of care and the information. The paragraphs below illustrate this.
The vision of the HRQoL concept was slightly inconsistent with the themes discussed among the neonatal physicians. In reflecting on HRQoL, some were certain of its value for improving care and providing information. Others were more reserved, noting that HRQoL changes both over time and between patients (“Responses to illness are highly individual, with difficulty in generalising QoL data”), thus limiting its utilization. Some neonatal physicians explained their hesitation and their difficulty in establishing standards for QoL, which cannot be generalizable. Quality of life could suggest a reflection of “life” and the notion of “quality”:“What is a good life?” with the “idea of a judgement that would depend on the society in which we live”.
Paediatric neurologists and neonatal physicians involved in long-term follow-up were conversely more aware of HRQoL methodology. They were more sensitive to the impact of prematurity on HRQoL both because they followed families more closely and because they were aware of the burden of care and the psychological, social and economic consequences. (A neonatologist said: “To estimate the HRQoL of our patients, it is to estimate the echo of the pathology in their daily life.” A paediatric neurologist added: “It can influence the care, by estimating for example the burden of the reeducations”.)
Consideration of long-term outcomes was irrelevant to professionals involved in acute perinatal care (An obstetrician said: “How can I justify the delivery of an extremely preterm infant in the context of an emergency if the data say that QoL could be bad? The immediate stakes in certain urgent perinatal situations outweigh the long-term potential QoL in children…It is impossible to talk to parents about data such as QoL because it is a question of managing situations with stakes in short-term survival, not of risking failure in the future.”). HRQoL seemed to appear “dangerous” to some participants (An obstetrician said: “it is not enough to estimate QoL: it is necessary to know what we are going to do with this evaluation…Can it influence medical decisions, knowing that this concept is evolutionary? In prenatal staff, using QoL data could favour termination of pregnancy requests.”). Because they provide care focused on patient survival rather than long-term qualitative outcomes, intensive care physicians believe that HRQoL could not represent a decision-making argument in terms of neonatal resuscitation, raising the issue of the “sacredness of life” versus the “QoL”. (An intensive care physician said: “When a very preterm child is born, the immediate stake is not its long-term quality of life, but mostly its survival”.)