Measuring quality of life and patient satisfaction in hand conditions

Background: Patient reported outcomes (PROs) are important for the assessment of the effectiveness of surgical interventions. If patient reported outcome measures (PROMs) are used to prioritise resources then it is important to ensure that the instruments are scientifically valid. This review aims to assess whether the currently available PROMs in hand surgery adhere to international development guidelines and whether they incorporate the use of item response theory (IRT) or Rasch Analysis (RA). Methods: A systematic review was performed to identify all PROMs that are relevant to the field of hand surgery. An a priori protocol with strict inclusion and exclusion criteria was followed. Only instruments developed in the English language were included. A comprehensive search of nine databases was undertaken. The development methodology of the identified instruments was then analysed, followed by examination of the domain content and initial psychometric validation of each instrument. Results: A total of 3,039 article citations were retrieved, 139 citations went on to a full text review. A total of 24 patient reported outcome instruments were identified. This consisted of 10 regional upper limb, six hand and/or wrist specific and a further eight condition specific instruments. Documentation of the details of PROM development was lacking for many instruments. Conclusion: The field of hand surgery has many instruments available but few fulfil international development guidelines or use IRT or RA psychometric techniques. There are limitations in either the breadth of the domains explored or the developmental methodology used in all currently available instruments. Hnd


Background
In the current health landscape it is important to collect meaningful information on the outcome of interventions performed in order to justify their value. 1,2 Increasingly, outcome measurement is broadening to include patient reported metrics that gauge satisfaction and health-related quality of life. 3 In hand surgery, traditional indicators such as mortality or rate of postoperative complications are not sensitive enough to distinguish variations. 4 Clinical measurements such as range of motion or grip strength do not take into account the patient's perspective. Constructs such as pain, or a patient's perception of their ability, cannot be directly measured and this is where self-reported outcomes are useful. 5 Patient reported outcomes (PROs) have become an important contributor to the overall picture of appraising outcomes at both the individual and health service level. Therefore, it is important that scientifically rigorous PROMs are used when evaluating the impact of an injury or disease and the associated treatment. 6 Operative interventions that reduce symptoms, improve functionality or change the appearance of the hand produce effects that influence multiple domains. As hands are a highly functional body part, it is logical that measuring physical function is a priority. However, hands are also integral in much of our day-to-day ability to perform in our social, professional and personal lives. and those that are focused on the symptoms and disability that result from a specific pathology.
There are benefits to each of these approaches, depending on the requirement for use. Ideally, instruments should be developed in keeping with the internationally established criteria of the scientific advisory committee of the Medical Outcomes Trust (SAC) for health related outcome measures. 7 There is robust debate in the field of psychometrics concerning the best methodology for PROM development. 8 Classical test theory (CTT) is being increasingly overtaken by item response theory (IRT) and Rasch analysis (RA). 9 The benefits of IRT and RA are numerous; they allow for both person and item parameters to be placed on the same scale and can be used to compare results between different populations. eight condition specific instruments (Figure 1).

Item reduction
Expert opinion

Psychometric analysis
Acceptability Internal consistency reliability

Interrater reliability
Test-retest reliability Validity comparison with other measures Ability to use smart phone / modern technology

Upper limb functional index-ULFI
The ULFI developed in 2006 26,45 is unique in that it is composed of three sections including a patientspecific index and a visual analogue scale rating overall status.

Discussion
All of the instruments discussed in this review aim to measure patients' subjective experiences of their hand surgery or hand condition. The quality of the questionnaires is variable in terms of their development and psychometric properties.
Despite the multitude of instruments that have been identified, it remains the case that 'no gold standard, objective criterion measurement tools for patient-rated hand outcomes exist'. 46 The POS-HA is the only instrument that has been developed in accordance with the criteria of the SAC and FDA guidelines. 7,15,51 The most widely used PROM for the upper limb is commonly accepted as the DASH. 32 As evident in treatments and therefore the use of a regional instrument has the risk of marginalising the effects of interventions. 55 Another consideration is that the

AJOPS | ORIGINAL ARTICLE
DASH is not specific for upper limb disability, as it has been shown to reflect lower limb and cervical spine pathology. 21,44 Since the development of the most commonly used hand PROMS in the 1990s, there has been much progress in the field of psychometrics. Classical test theory (CTT) is based on the assumptions that: 1. the more items on a scale, the less it will affected by random error 2. reliability and validity estimates are only applicable to the sample studied or a population well represented by the sample, and

Condition-specific instruments
There has been an increase in the PROMs available to measure the outcome of specific hand conditions such as the BCTQ, 36