Measurements

The present survey has included validated, widely used health and psychological measures to evaluate RA symptoms, as recommended by NICE and also as illustrated in the International Classification of Functioning (ICF) Core Set for RA patients. It was hoped that if the study identifies the existence of PPC in people with RA, the study outcomes may influence future interventions and models of psychological change, as well as health measures. The choice of reliable and valid questions for the questionnaire was made following a literature review and feedback from the supervisory team. In total, eight reliable and valid scales were used in this research to collect the data.

The data was collected using the following measures: The Silver Lining Questionnaire (SLQ, Sodergren, et al., 2002); the Arthritis Impact Measurement Scales-2 (AIMS-2, Meenan, et al., 1992); the Bristol Rheumatoid Arthritis Fatigue Scales (BRAFs, Dures et al., 2013); the Arthritis Self-Efficacy Scale (ASES, Lorig et al., 1989); Quality of Life- Rheumatoid Arthritis Scale (QoLRA Scale, Danao et al., 2001): English version; the Coping with Rheumatoid Arthritis Questionnaire (C-RAQ, Englbrecht et al., 2012); the short-form of the Psychological Well-Being Scales (PWB, Ryff, 1995) and the short-form of the Sense of Coherence (SOC, Antonovsky, 1987) (See Table 2.1.).

Table 2.1. Survey study questionnaires

Name Objective Total Items

The Silver Lining Questionnaire (SLQ)

Positive change 38

The Arthritis Impact Measurement Scales 2 (AIMS-2)

Physical health (mobility level, 5 items)+ (walking & bending, 5 items)+ (hand & finger function, 5 items) + (arm function, 5 items)= 20 items

Level of tension Mood (5 items)

Pain (5 items)

Social activity (5 items)

Support from family and friends (4 items)

20 5 5 5 5 4 The Bristol Rheumatoid Arthritis

Fatigue Scales (BRAFs)

Fatigue 1

The Arthritis Self –efficacy Scale (ASES)

Self-efficacy pain (5 items) & other symptoms (6 items) 11 The QoL-RA Scale is an RA-

specific Health Related Quality of Life (HRQoL)

Quality of Life 8

The Coping with Rheumatoid Arthritis Questionnaire (C-RAQ)

Coping skills 18

The short form of the

Psychological well-being (PWB)

Well-being 18

The short-form of the Sense of Coherence (SOC)

The ability to manage stress 13

Total 151

2.5.1. The Silver Lining Questionnaire (SLQ; Sodergren, et al., 2002)

The Silver Lining Questionnaire (SLQ) was created by Sodergren and Hyland (2000) at Plymouth University, UK. The aim was to measure the positive consequences of an illness. The scale was used to assess the extent to which people believe their illness has resulted in positive benefits despite the negative consequences of being ill. The scale measures improved interpersonal relationships, positive influence on others, self-improvement, reappraisal of life, restructuring of life, spiritual changes, sensitivity to emotions, skills and new pursuits, self-knowledge and confrontation of current concerns. The total score on the SLQ reflects the general PPC as a consequence of the illness. It comprises 38 items with five response categories, reflecting the extent to which people believe their illness has had a positive effect. Participants were asked to think about the positive aspects of their illness experience and to indicate the extent to which they agreed with the 38 statements using a five- point Likert scale ranging from (1) strongly disagree to (5) strongly agree.

Cronbach’s alpha was 0.93 across the samples, suggesting a high level of homogeneity among the SLQ items. The Pearson product correlation between the two assessments was =0.90; P<0.001,showing good retest reliability.

2.5.2. The Arthritis Impact Measurement Scales 2 (AIMS-2; Meenan, et al., 1992) The Arthritis Impact Measurement Scales-2 (AIMS -2) is an arthritis specific, self- administered questionnaire which assesses physical, emotional and social well-being using 12 domain scales: mobility level, walking and bending, hand and finger function, arm function, self-care, household tasks, social activities, support from family and friends, arthritis pain, work, level of tension and mood. The questionnaire also collects data about the severity of the disease, health perceptions, other significant illnesses and socio-demographic status. The AIMS-2 is a revised and expanded version of the original AIMS health status questionnaire. The comprehensiveness of the AIMS- 2 has been increased through the addition of items to measure satisfaction with health status, arthritis attribution, and problem prioritisation. The AIMS-2 is considered to be a specialised instrument which has been widely used for assessment, intervention management and outcome evaluation in people living with RA. Evaluation of the scale in 299 patients with RA gave internal consistency coefficients for 12 scales of 0.72- 0.91. The Cronbach's alpha

coefficient: 0.32- 0.87 and the test-retest reported 0.78-0.94 (Meenan et al., 1992). Internal validity was significant (P<0.001); patient designation of a problem was significantly associated with a poorer AIMS-2 scale score in that area. Reliability, factor analysis and validity were consistent with age, sex and education subgroups. The AIMS-2 subscales can be divided into four categories by considering the purpose of the survey study. The four components which combine the AIMS-2 scales into measures are:

a) Physical health function, including: mobility level (five items); walking and bending (five items); hand and finger function (five items) and arm function (five items). In total, 20 items were used to assess physical health.

b) Level of tension (five items) and mood (five items) were used to assess mental health symptoms.

c) For social activity (five items) and support from family and friends (four items), a total of nine items were used to assess social interaction.

d) The subscale of arthritis pain (five items) was used to measure arthritic pain. The short form of the AIMS-2 was used (44) as the questionnaire is long (78) and would be time-consuming for participants to compete; many of the sections are extensive and provide too much detail for a study where the main focus of the present research was to examine physical health and psychosocial factors. The short form of the scale has been widely used by previous authors (i.e., Brekke et al., 2003).

The participants were asked to indicate the extent to which they agreed or disagreed with each statement, using a five-point Likert scale ranging from (1) all days to (5) no days.

2.5.3. The Bristol Rheumatoid Arthritis Fatigue Scales (BRAFs; Dures et al., 2013) The Bristol Rheumatoid Arthritis Fatigue Scales (BRAFs) was developed to measure fatigue in RA patients. The scale was created in the rheumatology department in Bristol in the UK. For the purposes of this study, only one item from the Bristol Rheumatoid Arthritis Fatigue Numerical Rating Scales (BRAF- NRS) was used. This

is called the Visual Analogue Scale (VAS) with ‘no fatigue’ anchoring the left end and ‘worst imaginable fatigue’ the right end. Subjects were asked to make a mark on the 100 mm line that best indicated their average level of fatigue over the past week. The line is then measured from the left end to provide a score from 0 to 100. Linear analogue scale measures of fatigue have been found to be reliable and valid, especially when comparing subjects to them over time. They have good test-retest reliability and correlations with established methods of assessment for affective symptoms. VAS scales are usually more effective in measuring change over brief periods such as one week or one month than they are over six months or a year. These instruments are easy to use, easily comprehensible to the patients, have been shown to be sensitive to change and to have a strong test-retest reliability coefficient of r = 0.82- 0.95 (Dures et al., 2013). The item was ‘Please circle the number which shows your average level of fatigue during the past seven days’.

2.5.4. The Arthritis Self-Efficacy Scale (ASES; Lorig et al., 1989)

The Arthritis Self-Efficacy Scale (ASES) was developed by Lorig et al. (1989) to measure self-efficacy in patients with rheumatic diseases. The questionnaire contains: coping with pain (five items), details concerning function (nine items), and other symptoms related to RA (six items). Each item presents a statement with which the patient could agree or disagree. The scores are expressed as values of between 0 and 100, with a score of 0 representing the lowest possible self-efficacy level. For the present study it was decided not to include the nine questions regarding function so as to shorten the length of the questionnaire by omitting some questions. This research has included questions on self-efficacy as two scores: one for pain and one for other symptoms (fatigue, depression etc.). In some past studies, the ASES subscale ‘function’ has been omitted (Brekke et al., 2003; Hammond, Bryan, & Hardy, 2008). As such, two subscales were used as ‘pain’, r = 0.87, and ‘other symptoms’, r = 0.90. Cronbach’s α was 0.76 for the pain subscale and 0.87 for the ‘other symptoms’ subscale.

2.5.5. Quality of Life-Rheumatoid Arthritis Scale (QoLRA Scale; Danao et al., 2001): English version

This is a means of rheumatoid arthritis specific, health-related, quality of life assessment. Data for the psychometric analysis came from a sample of women with RA. The QoL-RA Scale, an eight-item scale, took two to three minutes to administer. Each item started with the definition of an element to be considered in rating one’s quality of life, followed by a question on rating one’s quality of life on a horizontal ten-point scale anchored with one (very poor) at one end and ten (excellent) at the other end. The elements are physical ability, pain, interaction with family and friends, support from family and friends, mood, tension, arthritis and health. The higher the QoL-RA scale score, the higher the Health-Related Quality of Life (HRQoL).

There were significant correlations from the QoL-RA Scale with the AIMS-2 subscales, ranging from 0.25 to 0.66 (P < 0.01). The Cronbach’s alpha coefficients was 0.90 in the English group (Danao, et al. 2001). The QoL-RA scale appears to meet the assumptions of a summated rating scale.

2.5.6. The Coping with Rheumatoid Arthritis Questionnaire (C-RAQ; Englbrecht et al., 2013)

Coping strategies have been assessed using a validated questionnaire based on the transactional model of stress and coping containing emotion- and problem-focused coping strategies by Folkman and Lazarus (1986). The questionnaire comprises the following coping domains: cognitive reframing, distancing, emotional expression and active problem solving. Each of the18 items were answered using a scale ranging from zero (not at all) to three (a lot), indicating the extent to which the corresponding coping behaviour was used during the past week to cope with RA, or by indicating in a separate category that the described coping behaviour was not applicable to the patient. The Cronbach’s alpha coefficients were constantly ≥ 0.7, indicating satisfactory internal consistency for all coping strategies with respect to their purpose (Englbrecht et al. 2013).

2.5.7. The short-form of the Psychological Well-Being Scales (PWB; Ryff, 1995)

Psychological Well-Being Scales (PWB, Ryff, 1995) were used to examine the well- being of the target sample. This is a theoretical model of psychological well-being that encompasses six distinct dimensions of wellness, which are: autonomy, environmental mastery, personal growth, positive relations with others, purpose in life and self-acceptance. A six-point answering scale was used for all scales, ranging from one (totally disagree) to six (totally agree). The 18 item version of the scale was used by previous authors (Wood & Joseph, 2010). The test-retest reliability coefficients over a six-week period ranged from 0.81– 0.88. Correlations with prior measures of positive functioning ranged from 0.25- 0.73. Correlations with prior measures of negative function are all negative and significant, with coefficients ranging from 0.30- 0.60. The inter-correlations among the measurements themselves showed coefficients ranging from 0.32 - 0.76.

2.5.8. The short-form of the Sense of Coherence (SOC; Antonovsky, 1987)

The short form of Sense of Coherence (SOC, Antonovsky, 1987) has 13 items and has been widely used over the last 13 years to measure resilience. The scale was employed to measure how people manage stressful situations and stay well. The scale assesses a person’s ability to manage stressful conditions such as dealing with RA. Five of the items are negatively stated and reversed in scoring. These are item numbers: one, two, three, seven and ten. Therefore, a high score always indicates a stronger SOC. This is reliable and adequately valid. The reliability was found to be between 0.74- 0.91 (Antonovsky, 1993). Each question has seven possible answers with number one and seven being the extreme answers.