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Patients given a voice over hand surgery

(Southern Health News, July 2018)

Patients given a 'voice' over hand surgery

The second phase of an international project aimed at empowering patients to have a say in hand surgery services will be launched as part of an initiative at Flinders Medical Centre.

The “HAND Q” project is developing a Patient Reported Outcomes Measure (PROM) for hand surgery patients. This is a tool that can be used to give patients a voice and for services to be shaped based on the feedback and perspective of the patient.

Chief Investigator, Dr Kyra Sierakowski said measuring outcomes from the perspective of the patient is gaining acceptance in various fields of both medicine and surgery.

“Regardless of age, gender or profession, we all demand a huge variety of functional tasks from our hands every day. Even a minor issue with your hand can cause a significant effect on a person’s everyday functioning,” Sierakowski said.

The HAND-Q is a new PROM that is being developed by Dr Kyra Sierakowski at Flinders University to improve the measurement of outcomes following hand surgery.

The HAND-Q is the first of the “Q-PROMs” with the lead developer based in Australia.

 “Only the patient truly understands their current health status and their resulting quality of life,” Dr Sierakowski said.

“Our “Q-series” of PROMs are questionnaires developed using information provided by actual patients who have experienced surgery and a set of scientific methods to then accurately measure outcomes of surgery from the patient’s perspective,” she said.

“By measuring outcomes from the patient’s perspective we can improve our health services and empower our patients.”

Currently the “Q-series” of questionnaires have been developed in the United States and Canada, with Flinders Medical Centre being an early adopter of the BREAST-Q in the Breast Reconstruction Unit by Dr Nicola Dean and her team.

The “Q series” includes the BREAST-Q, FACE-Q, BODY-Q and CLEFT-Q. With the development of the HAND-Q, Flinders Medical Centre is at the forefront of this innovative international project.

“I am extremely excited to be working with the “Q-team” who are international experts in developing questionnaires according to best scientific practices,” Dr Sierakowski said.

“Hand surgery patients have been and will continue to be involved at every stage throughout the development process to ensure that the HAND-Q is engaging and meaningful to the patients who will be using it,” she said.

Phase 1 of the HAND-Q has involved Dr Sierakowski interviewing patients who have a condition of their hand that has required surgery.

A variety of patients participated from both Australia and Canada and these interviews are designed to give patients “a voice” about their own individual experiences of surgery.

This information about patient’s first hand experiences is being used to produce the first draft of the HAND-Q.

Phase 2 will involve asking hand surgery patients to complete the draft HAND-Q questionnaire.

“Currently, we’re actively recruiting until September 2018. The study will be held locally here at Flinders Medical Centre as well as centres around the world,” Dr Sierakowski said. Patient data is being collected from centres in UK, USA, Canada, Netherlands, France, India and Pakistan.

Flinders Medical Centre participants will provide vital input into the development of this high quality questionnaire.  The HAND-Q will be designed for use in multiple countries and aims to provide a robust method of assessing outcome in the hand surgery population.

Lynne Greenlees, of Mount Barker, is a participant in the study and said she appreciated being asked about how she felt.

“I was diagnosed with osteoarthritis in my hand two years ago and it got very bad, very quickly. I didn’t want exercises to try and live with the condition – I wanted to solve it. It was helpful being asked how I felt about that.”

Lynne underwent surgery where a tendon from her arm was used to wrap around her thumb joint to replace cartilage.

“I’m thrilled with the results. My thumb will never be the same as it was, but I have back 90% of movement and use.”

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