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PWS families like team clinic over current care, small study finds

Pediatric Multidisciplinary Team Clinics for Prader-Willi Syndrome (PWS) offer an improved service that supports the diverse and challenging needs of children with the disease, according to a small UK study based on interviews with parents.

Parents reported that this type of clinic allowed them to deal with issues other than health, such as social support and behavior, and to connect not only with PWS charities, but also with other families of children with the disease.

These benefits are in line with guidelines recommending a multidisciplinary team in the management of PWS and can be used to inform the design of a new service to support PWS patients and their families, the researchers noted.

The study, “Qualitative Parental Perceptions of a Pediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome, ”Was published in the Pediatric Endocrinology Clinical Research Journal.

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PWS, the most common genetic cause of life-threatening childhood obesity, is associated with insatiable hunger, hormonal dysfunction, developmental delays, learning difficulties, temper tantrums, adjustment difficulties to sleep changes and problems.

“The multifaceted nature of this disorder poses challenges for clinicians, and medical care alone can leave needs unmet,” the researchers wrote, adding that “a multidisciplinary team clinic (MDT) was recommended because it offers a patient-centered biopsychosocial approach for treatment. “

As more research supports a multidisciplinary team as a “best model of care for children with PWS and their families from the perspective of health professionals,” perspectives from parents of children with PWS in a clinic MDT PWS are still lacking.

To address this issue, a team of researchers in the UK collected the perceptions and experiences of parents of six children with PWS (five girls and one boy) who attended a pilot MDT PWS clinic launched in the south- west of England, an area where there was no such clinic.

Three appointments were concerned. The children were first seen by a pediatric endocrinologist, a nurse specializing in weight management and a nurse specializing in pediatric endocrinology. The second appointment included a clinical psychologist and a dietitian, while the third involved a social worker.

An adult psychiatrist with an interest in PWS was also involved, as a volunteer observer.

The families (nine parents) were invited to participate in qualitative semi-structured interviews before and / and after the clinic. They were led by researchers who were not part of the clinic team and by the clinic social worker.

The aim was to explore the parents’ experience in the MDT clinic in relation to their previous care and to understand the areas where families need it most.

Families reported that the multidisciplinary clinic provided better support in terms of integrated care, professional support, behavioral support, signaling social support (respite and financial), and connections to the wider PWS community.

Previous access to medical and social care varied widely, with no family having previously had access to a MDT, and most families noted that they only had regular contact with an endocrinologist.

Parents felt that this type of clinic offered a ‘one-stop-shop’ that not only offered a ‘joint’ approach and facilitated ‘collaborative and coordinated strategies without long referral times’, but also reduced’ disruption and school holidays caused by multiple appointments, ”the researchers wrote.

Long travel times have been found useful to receive this type of care.

The collaboration between the psychologist and the dietitian was appreciated by families, as it allowed for a more complete and integrative exploration of behavior problems alongside the relationship with the patients’ main trigger, food.

Meeting with a social worker was critical to the families’ experience, as many did not “have access to the full range of supports available to them,” the team wrote.

The social worker was effective in helping to make connections between health care, education, respite, activities and financial support.

Parents also appreciated the connection to specific SPW charities, but most importantly, the connection to other families, which the clinic would likely provide.

“Although clinics may not perceive peer support as the main function of this type of appointment, other UK clinics are making it a goal,” the scientists wrote, adding that “the help access to relevant charities and networks to gain additional connection would be of value. “

Families suggested that speech and language specialists also be part of EMD. They also stressed the importance of including a playmaker to support the children on potentially long dates and to allow more candid discussions of the difficulties without the children overhearing.

Overall, parents rated the MDT clinic “as superior to current care, providing more convenient access to an improved service, which would provide integrated and cohesive care for their children’s diverse, challenging and changing needs,” wrote the researchers.

“By having regular appointments, potentially every six months, throughout their child’s life, families were optimistic that the clinic could offer sustainable management that would anticipate problems,” said the team.

“As access to specialized care is currently not universally accessible, this clinic would facilitate equal access to everyone in the region, regardless of geography or finances,” the investigators concluded.

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