PWS Families Favor Team Clinic Over Current Care, Small Study Suggests

Marta Figueiredo, PhD avatar

by Marta Figueiredo, PhD |

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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 parental interview-based U.K. study.

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

These benefits are in line with guidelines recommending a multidisciplinary team in the management of PWS and may 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 Paediatric Multidisciplinary Team Clinic for Prader-Willi Syndrome,” was published in the Journal of Clinical Research in Pediatric Endocrinology.

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

“The multifaceted nature of this disorder provides challenges to clinicians, and medical care alone may leave needs unmet,” the researchers wrote, adding that “a multidisciplinary team (MDT) clinic has been recommended as it provides a patient-centered, biopsychosocial approach to treatment.”

While increasing research supports a multidisciplinary team as the “best model of care for children with PWS and their families from a health professional point of view,” the perspectives of parents of children with PWS on an MDT PWS clinic are still lacking.

To address this, a team of researchers in the U.K. collected the perceptions and experience of parents of six children with PWS (five girls and one boy) who attended a pilot MDT PWS clinic launched in South West of England, a region where there was no such clinic.

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

Also involved, as a voluntary observer, was an adult psychiatrist with an interest in PWS.

Families (nine parents) were invited to take part in semi-structured qualitative interviews before or/and after the clinic. They were led by researchers who weren’t part of the clinic’s team and by the clinic’s social worker.

The goal was to explore parents’ experience in the MDT clinic compared with their previous care and understand the areas of greatest need for families.

Families reported that the multidisciplinary clinic offered improved support in terms of integrated care, professional input, behavioral support, signposting to social support (respite and financial), and connections with the wider PWS community.

Previous medical and social care access varied greatly, with no family previously accessing an MDT, and most families noted that they kept regular contact only with an endocrinologist.

Parents felt that this type of clinic offered a “one-stop-shop” that not only provided a “joined-up” approach and facilitated “collaborative, coordinated strategies without lengthy referral times,” but also reduced “the disruption and time-off school caused by multiple appointments,” the researchers wrote.

Long travel times were considered worthwhile to receive this type of care.

The collaboration between the psychologist and dietitian was valued by the families, as it allowed a more comprehensive and integrative exploration of behavioral issues alongside the relationship with the patients’ main trigger, food.

The appointment with a social worker was essential for the families’ experience, as many were not “having access to the full range of support available to them,” the team wrote.

The social worker effectively helped to establish connections between healthcare, education, respite, activities, and financial support.

Parents also valued the connection with PWS specific charities, but most importantly, the connection with other families, which the clinic would likely offer.

“Whilst clinics may not perceive peer support to be the primary function of this kind of appointment, other UK clinics do list this as an aim,” the scientists wrote, adding that “help in accessing relevant charities and networks to obtain further connection would be valuable.”

Families suggested that speech and language specialists should also be part of the MDT. They also emphasized the importance of including a play-worker to support the children during possibly lengthy appointments and to allow more candid discussions about difficulties without the children hearing.

Overall, parents felt that the MDT clinic “was superior to current care, offering more convenient access to an enhanced service, which would provide integrated and consistent care for their children’s diverse, challenging and changing needs,” the researchers wrote.

“By having consistent appointments, potentially every six months, throughout their child’s life, families were optimistic that the clinic could offer sustainable management that would enable concerns to be pre-empted,” the team said.

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