The development and initial psychometric evaluation of a measure assessing adherence to prescribed exercise: the Exercise Adherence Rating Scale (EARS).

OBJECTIVES: There is no gold standard for measuring adherence to prescribed home exercise. Self-report diaries are commonly used however lack of standardisation, inaccurate recall and self-presentation bias limit their validity. A valid and reliable tool to assess exercise adherence behaviour is required. Consequently, this article reports the development and psychometric evaluation of the Exercise Adherence Rating Scale (EARS). DESIGN: Development of a questionnaire. SETTING: Secondary care in physiotherapy departments of three hospitals. PARTICIPANTS: A focus group consisting of 8 patients with chronic low back pain (CLBP) and 2 physiotherapists was conducted to generate qualitative data. Following on from this, a convenience sample of 224 people with CLBP completed the initial 16-item EARS for purposes of subsequent validity and reliability analyses. METHODS: Construct validity was explored using exploratory factor analysis and item response theory. Test-retest reliability was assessed 3 weeks later in a sub-sample of patients. RESULTS: An item pool consisting of 6 items was found suitable for factor analysis. Examination of the scale structure of these 6 items revealed a one factor solution explaining a total of 71% of the variance in adherence to exercise. The six items formed a unidimensional scale that showed good measurement properties, including acceptable internal consistency and high test-retest reliability. CONCLUSIONS: The EARS enables the measurement of adherence to prescribed home exercise. This may facilitate the evaluation of interventions promoting self-management for both the prevention and treatment of chronic conditions.

Mood and illness experiences of adults with cystinosis.

BACKGROUND: Cystinosis is an autosomal recessive disorder with an estimated incidence of 1/100,000-200,000 live births. The main complications are renal disease, visual impairment, endocrine abnormalities and growth retardation. OBJECTIVE: Our aim was to describe the mood and illness experiences of adults with cystinosis. METHODS: Twenty-three patients attending the adult cystinosis clinic at Guy's Hospital, London were asked to complete the Hospital Anxiety and Depression Scale (HADS) questionnaire anonymously. Eighteen months later, 21 patients who were still alive were invited to participate in a semi-structured interview aimed at exploring illness experience. RESULTS: Eighteen patients completed the HADS questionnaire (means: depression = 7.2; anxiety = 9.2), and 12 participated in the interviews. Three significant themes emerged: (i) the main physical complaints were tiredness, the impact of short stature and side effects of cysteamine medication, especially halitosis, poor taste and nausea. (ii) Cystinosis has a major impact on relationships, autonomy and social life, including reliance on families for support to self-manage, distress at dependence, social anxiety, reduced social involvement and some positive effects on family cohesiveness. (iii) Patients use a range of individual coping strategies to deal with their illness and medication. CONCLUSIONS: Adult cystinosis patients reported comparatively high-anxiety and depression scores. Common complaints related to the complications of cystinosis and the side-effects of cysteamine, which impacted on relationships, autonomy and social life. Patients described a wide range of strategies, including benefit finding, for coping with cystinosis.

Individual and intervention-related factors associated with adherence to home exercise in chronic low back pain: a systematic review.

BACKGROUND CONTEXT: Exercise has been shown to reduce pain and increase function in patients with chronic low back pain. However up to 70% of patients do not engage in prescribed home exercise. Physiotherapists need to understand more about the complex factors influencing patients' adherence to prescribed home exercise to tailor their exercise interventions more effectively and support patients to self-manage. PURPOSE: This review identifies factors associated with adherence to health care practitioner-prescribed home exercise in adults with chronic low back pain. STUDY DESIGN: Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines were used for the reporting of this review. PATIENT SAMPLE: We explored literature in which the authors studied adherence to home exercise in adults with CLBP. OUTCOME MEASURES: Adherence to home exercise was the primary outcome. Additional outcome measures were recorded in the data extraction table. METHODS: The following databases were searched: Embase, PsychINFO, MEDLINE, PEDro, and the Cochrane Central Register of Controlled Trials. Data were independently extracted and assessed for methodologic quality by two reviewers. RESULTS: Eleven randomized controlled trials, including 1,088 participants, met the inclusion criteria. Moderate evidence was found for one individual patient subfactor and three intervention-related subfactors associated with increased adherence to home exercise. These subfactors were greater health locus of control, supervision, participation in an exercise program, and participation in a general behavior change program incorporating motivational strategies. CONCLUSIONS: This is the first systematic review investigating adherence to prescribed home exercise in a chronic low back pain population. It is difficult to draw firm conclusions because the research lacks detailed descriptions of intervention content. The use of a taxonomy of behavior change techniques has been suggested to overcome this key problem. This review has highlighted the lack of standardized measures of adherence to prescribed home exercise. The development of a validated measure of adherence should be a priority because this will provide a better understanding of the multitude of factors that may influence adherence to home exercise.

Linguistic and psychometric validation of the Diabetes-Specific Quality-of-Life Scale in U.K. English for adults with type 1 diabetes.

OBJECTIVE: To develop a linguistically and psychometrically validated U.K. English (U.K./Ireland) version of the Diabetes-Specific Quality-of-Life Scale (DSQOLS) for adults with type 1 diabetes. RESEARCH DESIGN AND METHODS: We conducted independent forward and backward translation of the validated German DSQOLS. An iterative interview study with health professionals (n = 3) and adults with type 1 diabetes (n = 8) established linguistic validity. The DSQOLS was included in three Dose Adjustment for Normal Eating (DAFNE) studies (total N = 1,071). Exploratory factor analysis (EFA) was undertaken to examine questionnaire structure. Concurrent and discriminant validity, internal consistency, and reliability were assessed. RESULTS: EFA indicated a six-factor structure for the DSQOLS (social aspects, fear of hypoglycemia, dietary restrictions, physical complaints, anxiety about the future, and daily hassles). High internal consistency reliability was found for these factors and the weighted treatment satisfaction scale (α = 0.85-0.94). All subscales were moderately, positively correlated with the Audit of Diabetes-Dependent Quality-of-Life (ADDQoL) measure, demonstrating evidence of concurrent validity. Lower DSQOLS subscale scores [indicating impaired quality of life (QoL)] were associated with the presence of diabetes-related complications. CONCLUSIONS: The DSQOLS captures the impact of detailed aspects of modern type 1 diabetes management (e.g., carbohydrate counting and flexible insulin dose adjustment) that are now routine in many parts of the U.K. and Ireland. The U.K. English version of the DSQOLS offers a valuable tool for assessing the impact of treatment approaches on QoL in adults with type 1 diabetes.