Orthotic management of instability of the knee related to neuromuscular and central nervous system disorders: qualitative interview study of patient perspectives

Abstract

ObjectivesAdults with knee instability related to neuromuscular disorders or central nervous conditions often experience mobility problems and rely on orthoses to improve function and mobility. Patient views of device effectiveness and acceptability are underexplored. Our study aimed to elicit device users’ perspectives regarding fitting, acceptability, effectiveness and use of orthoses, and identify important treatment outcomes.DesignQualitative descriptive study using in-depth semistructured interviews. Interview transcriptions were coded and thematically analysed, using ‘Framework’.Setting and participantsA purposive sample of 24 adult users of orthotic devices. Nineteen patients were recruited across three National Health Service sites, and five people through charities/patient support groups in England. Half of the participants had been diagnosed with poliomyelitis, and the remainder with multiple sclerosis, Charcot-Marie-Tooth disease, spinal injury or spina bifida, and stroke. The median age of participants was 64.5 years (range 36–80 years).ResultsPatients’ medical condition impacted significantly on daily life. Participants relied on orthotic devices to enable engagement in daily activities. Patient goals for mobility were linked to individual circumstances. Desired treatment outcomes included reduction in pain, trips and falls, with improved balance and stability. Effectiveness, reliability, comfort and durability were the most valued features of orthoses and associated with reported use. Obtaining suitable footwear alongside orthotic devices was a significant concern. Time pressures during device fitting were viewed negatively.ConclusionsOrthotic devices for knee instability play a crucial role in promoting, maintaining and enhancing physical and psychological health and well-being, enabling patients to work, engage in family life and enjoy social activities. Future research should consider how best to measure the impact of orthotic devices on patient quality of life and daily functioning outside the clinic setting, as well as device use and any adverse effects.Trial registration numberThis qualitative study was retrospectively registered as Current Controlled Trials ISRCTN65240228.

Use and Usability Of Custom-Made Knee-Ankle-Foot Orthoses In Polio Survivors with Knee Instability: A Cross-Sectional Survey

“…The topic "orthosis experience" therefore warrants further investigation in a prospective study. Nevertheless, our finding substantiates the results of a qualitative study that indicated a clear need for intensive support when first receiving an orthotic device, as people need time to adjust to an altered self-image (15), in addition to the practicalities of their KAFO in daily life, such as learning to operate the KAFO and adopting an efficient and functional gait pattern (24).…”

“…Amongst discontinued users, satisfaction was lowest for ease of use and comfort. Low satisfaction in terms of ease of use can imply problems with donning and doffing of the KAFO, which has been reported previously as a negative aspect of KAFO use in polio survivors (15) and individuals inclusion body myositis (29). Performing activities such as going up and down stairs, cycling or operating the KAFO may also result in low satisfaction with ease of use (28,30).…”

“…The main explanations for discontinued use reported in the current study were hindrance during activities, not reducing mobility problems and an uncomfortable fitting, all of which are familiar from earlier findings on lower extremity orthosis use in polio survivors ( 12 , 13 ) and individuals with other neurological diseases ( 22 ). Furthermore, a recent qualitative study that included polio survivors with a KAFO prescribed for knee instability concluded that these issues were the most negative aspects of an orthosis ( 15 ). Although hindrance during activities was not further explored in our survey, in clinical practice patients commonly report hindrance from their KAFO when sitting down, climbing stairs or when cycling.…”

“…It is therefore still unclear which usability factors influence an individual’s decision to use their KAFO, usability in this context being defined as “the extent to which a product can be used by specified users to achieve specified goals with effectiveness, efficiency and satisfaction in a specified context of use” ( 14 ). A recent qualitative study in a relatively small sample of KAFO users indicated that several usability factors, including perceived effectiveness and satisfaction, correlated with participants’ reports of KAFO use or discontinued use ( 15 ), but no study to date has addressed differences in these factors between users and discontinued users. A better understanding of factors of usability and their relation to KAFO use would help to further improve KAFO applications in clinical practice.…”

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“…One prior qualitative study of orthotic use by people with neuromuscular conditions (including some people with experiences of polio) has also highlighted the variability in outcome experiences from new orthotics -ranging from very positive to very negative (McCaughan et al, 2019). This prior study identified that any transition from an old to new orthotic could be challenging, making people reluctant to move to a new orthotic.…”