Parents' views on growth hormone treatment for their children: psychosocial issues

Abstract

BackgroundWe evaluated the opinions of parents in The Netherlands concerning treatment of their children with growth hormone, and examined beliefs and perceptions about treatment and quality of health care communication and support.MethodsAn Internet survey was completed by 69 parents who had children prescribed growth hormone and were part of the Patient Intelligence Panel. Acceptance of the diagnosis and treatment was investigated with reference to four topics, ie, search and quality of information, involvement in decision-making process, operational aspects, and emotional problems and support.ResultsAmong the parents surveyed, 48% reported a lack of freedom to choose the type of growth hormone device that best suited their needs, 92% believed that their children (and they themselves) would benefit if the children self-administered growth hormone, and 65% believed training to support self-administration would be helpful. According to 79%, the availability of support from another parent with experience of treating their own child with growth hormone, alongside their doctor, would be valuable. Thirty-seven percent of the parents indicated that their children felt anxious about administration of growth hormone, and 83% of parents would appreciate psychological support to overcome their anxiety. An increase in reluctance to receive treatment with growth hormone was observed by 40% of parents after the children reached puberty, and 57% of these parents would appreciate psychological support to overcome this reluctance.ConclusionUnderstanding how growth hormone treatments and their implications are perceived by parents is a first step towards addressing quality of growth hormone treatment, which may be instrumental in improving adherence. The data show a need for support and involvement of parents in the process of choosing a growth hormone device. This decision-making process may be instrumental in improving acceptance and diminishing emotional problems for children using growth hormone.

Shared decision making and patient choice for growth hormone therapy: current perspectives

“…This information may include precise and accurate medical information of the underlying disease condition, the treatment options available, the benefits and side effects of these options, the expenses to be incurred by the parents, the treating doctor's experience with similar cases, and finally, the doctor's opinion on the choice of therapy that is preferred. 27 The study by van Dongen and Kaptein 6 showed that contrary to the belief that a chronic condition such as GH therapy warrants active involvement of the parents, their actual involvement in the decision-making process as perceived by them was in fact much lesser than optimal. Parents did not feel that they were involved in the process of making treatment decisions.…”

“…The patient's and parent's perception of treatment benefit may play an important role in acceptance of the doctor's recommendation and also in continuing the GH therapy with adequate adherence. 6 It is important for the health care provider to understand parental perceptions and beliefs regarding the illness and the treatment, as this will help to support them in a better way.…”

“…The child's preferences (particularly while considering injectable therapies) and the parent's goal for their child are the key factors influencing their decisions when it comes to discontinuing chronic therapy. In the study done by van Dongen and Kaptein, 6 37% of children using GH therapy felt anxious about the device used (needle and pain associated with injection). Similarly, 40% of the parents admitted that they had noticed an increase in reluctance …”

“…In the study done by van Dongen and Kaptein, 6 92% of the parents felt that self-administration by the child would give them and the child more freedom in their daily lives, and 65% felt a specially designed training course for the same would be beneficial when the child is around 10-11 years of age. How to interact with the child or what role the child is expected to play in the decision-making process largely depends on the child's intellectual and developmental ability to analyze the situation and voice his/her opinion.…”

“…6 Parents often gather information regarding the disease status and therapeutic options (particularly for chronic illnesses) from multiple sources. This may include one or more health care providers (taking second opinion), other individuals in similar situations (established disease-specific support groups), and the Internet (Wikipedia and Google).…”