Report from the Focus Group

Monday 22 September 2014 (18.30 – 20.30)

Present: Hinne Rakhorst (NVPC), Margreet Pols and Annefloor van Enst (Knowledge Institute), four participants who have had an open fracture of the lower limb.

 

Opening

The meeting was opened by Margreet Pols who explained the aim of the focus group; i.e. to ask people who have had an open fracture of the lower limb about their experiences and to hear their suggestions concerning improvement of care. Their experiences will be taken into consideration in the recommendations of the projected guidelines on open fracture of the lower limb. Participants in the focus group:

a) Had a motorbike accident in Norway. As a result she sustained a hip fracture and a complex lower limb fracture. The rehabilitation process took two years and she still has pain in her hip.

b) Had an accident at work which involved a heavy weight landing on his lower leg. He sustained fractures of his collar bone, and upper and lower leg. He has had nine operations, and after 2.5 years is able to function adequately again.

c) Lower limb was trapped in a rope on a boat. In consultation with her treating physician, she decided to have an amputation as she thought this would shorten the rehabilitation period. After three months, her functioning was adequate to good. Has experienced no more problems.

d) Car drove into her while she was cycling. Sustained severe neck injury and complex fracture of the lower limb. Resumed work after three months, and after 1.5 years has had no more problems.

 

Report on group discussion

Acute phase

Three of the participants were transported to hospital by ambulance and one by helicopter. Pain relief was very important; in all cases enough was available and the patients were regularly asked if they were getting enough pain relief. They were all positive about this.

 

The patients were not involved in the choice of treatment centre. At the acute trauma stage the patients did not consider themselves to be in any state to play a meaningful part in this decision. In retrospect, two of them would have had a slight preference for the immediate choice for a centre of excellence. Participants indicated that they thought it important that their partner/family should be able to be with them in the acute stage of admission to represent their interests.

 

The possibility of amputation was discussed with two participants straight away. At this stage, the participants knew little about what course follow-up would take. Nonetheless, they thought that this knowledge would not necessarily have changed their choice. The participants indicated that they would have liked to have had a photograph of their leg at the acute phase.

 

Treatment plan for definitive reconstruction

It was very much appreciated if treating physicians took the time to explain the treatment options in clear and straightforward language. Participants also said that it was sometimes difficult to think of the right questions to ask. For this reason, they preferred to have their partner or other family member present when the treatment options were discussed. If this type of discussion takes place at grand rounds in the morning, the partner is often not there. The partners were often also unhappy with this situation. Two patients indicated that differing advice was given by treating physicians which made it very difficult for them.

 

Three participants indicated that their preference was to undergo definitive reconstruction at a centre of excellence. One patient said that their general practitioner took the initiative in arranging this.

 

When reconstruction takes place, nerve injury should be taken into account. One participant thought that the neurologist was only interested in brain injury as he only did a few little tests for feeling on the foot and lower leg. The participant said that when the leg was closed it felt like a nerve may have been stitched in too, because the participant still has problems  with it. This should be taken into account when definitive reconstruction is being planned.

 

Rehabilitation

The patients did not know enough beforehand about how long rehabilitation would take and how tiring it would be, but they did not experience this as being negative. One participant said they were glad that they did not know in advance how long recovery would take as this motivated them not to give up.

 

The rehabilitation period was difficult and demanding. Particularly the period in the wheelchair. At that time, three of them felt they were stigmatised by others. Later on in rehabilitation when they were able to use a mobility scooter, two participants felt positive about it as they felt it gave them more freedom.

 

Participants indicated that after 6 and 9 months they began to doubt if they would ever regain their normal functioning. They said it would have really helped them if they had been able to talk to other people in the same situation at that time.

 

Two participants said that there were no clear indications of when they would be able to drive a car again. Two participants said they had re-taken and passed their driving test and had had modifications made to their car.

 

The involvement of the treating physician throughout treatment was their most positive experience. Their most negative experiences concerned incidents when they were in great pain but were not taken seriously

 

Three participants said that they would like to have rehabilitation in their own home area. One participant preferred to have all treatment under one roof due to the relationships that are built up.

 

Outcomes

Outcomes participants regarded as important:

 

One outcome that was regarded as being less important:

 

Questions from the floor and close

There were no questions from the floor. All participants were thanked for their contributions.