Not all roads lead to Rome - a review of quality of life measurement in diabetes

Aims Quality of life (QoL) is recognized widely as an important health outcome in diabetes, where the burden of selfmanagement places great demands on the individual. However, the concept of QoL remains ambiguous and poorly defined. The aim of our review is to clarify the measurement of QoL in terms of conceptualization, terminology and psychometric properties, to review the instruments that have been used most frequently to assess QoL in diabetes research and make recommendations for how to select measures appropriately.

Methods A systematic literature search was conducted to identify the ten measures most frequently used to assess QoL in diabetes research (including clinical trials) from 1995 to March 2008.

Results Six thousand and eight-five abstracts were identified and screened for instrument names. Of the ten instruments most frequently used to assess ‘QoL’, only three actually do so [i.e. the generic World Health Organization Quality of Life (WHOQOL) and the diabetes-specific Diabetes Quality of Life (DQOL) and Audit of Diabetes-Dependent Quality of Life (ADDQoL)]. Seven instruments more accurately measure health status [Short-Form 36 (SF-36), EuroQoL 5-Dimension (EQ-5D)], treatment satisfaction [Diabetes Treatment Satisfaction Questionnaire (DTSQ)] and psychological well-being [Beck Depression Inventory (BDI), Hospital Anxiety and Depression Scale (HADS), Well-Being Questionnaire (W-BQ), Problem Areas in Diabetes (PAID)].

Conclusions No single measure can suit every purpose or application but, when measures are selected inappropriately and data misinterpreted, any conclusions drawn are fundamentally flawed. If we value QoL as a therapeutic goal, we must ensure that the instruments we use are both valid and reliable. QoL assessment has the proven potential to identify ways in which treatments can be tailored to reduce the burden of diabetes. With careful consideration, appropriate measures can be selected and truly robust assessments undertaken successfully.

The ADKnowl: identifying knowledge deficits in diabetes care

Aims To present the ADKnowl measure of diabetes-related knowledge and evaluate its use in identifying the nature and extent of patient and health professional knowledge deficits.

Method The ADKnowl was used in a large-scale study of 789 patients (451 treated with insulin and 338 treated with tablets and/or diet) attending for annual review at one of two hospital out-patient diabetes clinics

Results Knowledge deficits were apparent in the patients. For example, 57% did not recognize the inaccuracy of the statement `fresh fruit can be eaten freely with little effect on blood glucose levels'. Seventy-five percent of patients did not know that it is advisable to trim toenails to the shape of the toe. Knowledge deficits were identified for many other areas of diabetes management, e.g. prevention of hypoglycaemia, avoidance of ketoacidosis. Sixteen health professionals at the clinics answered the same items. Contrary to recommendations, 25% of health professionals thought that fresh fruit could be eaten freely. Seventy-five percent of health professionals did not know the current recommendations for trimming toenails. As expected, HbA1c did correlate with scores from two specific items, while HbA1c did not correlate with summed ADKnowl score.

Conclusions Patient knowledge deficits were identified. Some specific knowledge deficits among health professionals may be the cause of some patient knowledge deficits. The ADKnowl is a useful tool in assessing both patient and health professional knowledge deficits and is available for use in a context of continuing evaluation.

Patient-reported outcomes following islet cell or pancreas transplantation (alone or after kidney) in type 1 diabetes: a systematic review

Aims For selected individuals with complex Type 1 diabetes, pancreatic islet transplantation (IT) offers the potential of excellent glycaemic controlwithout significant hypoglycaemia, balanced by the need for ongoing systemic immunosuppression. Increasingly, patient-reported outcomes (PROs) are considered alongside biomedical outcomes as a measure of transplant success. PROs in IT have not previously been compared directlywith the closest alternate treatment option, pancreas transplant alone (PTA) or pancreas after kidney (PAK).

Methods We used a Population, Intervention, Comparisons, Outcomes (PICO) strategy to search Scopus and screened 314 references for inclusion.

Results Twelve studies [including PRO assessment of PAK, PTA, islet-after kidney (IAK) and islet transplant alone (ITA); n = 7–205] used a total of nine specified and two unspecified PRO measures. Results were mixed but identified some benefits which remained apparent up to 36 months post-transplant, including improvements in fear of hypoglycaemia, as well as some aspects of diabetes-specific quality of life (QoL) and general health status. Negative outcomes included short-term pain associated with the procedure, immunosuppressant side effects and depressed mood associated with loss of graft function.

Conclusions The mixed resultsmay be attributable to limited sample sizes. Also, some PROmeasures may lack sensitivity to detect actual changes, as they exclude issues and domains of life likely to be important forQoL post-transplantation and when patients may no longer perceive themselves to have diabetes. Thus, the full impact of islet ⁄ pancreas transplantation (alone or after kidney) on QoL is unknown. Furthermore, no studies have assessed patient satisfaction, which may highlight further advantages and disadvantages of transplantation.