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Table 1 Outcome measures

From: Follow-up care after treatment for prostate cancer: protocol for an evaluation of a nurse-led supported self-management and remote surveillance programme

Outcome measures at T0, T1 and T2
Description of outcome Measure used Description of measure Psychometric/biometric properties of measure
Unmet need (primary outcome) Cancer Survivors’ Unmet Needs Measure, (CaSUN) [22] 35 questions regarding unmet need in 5 domains of existential survivorship; comprehensive cancer care; information; quality of life; relationships. Additional 6 questions about positive life changes and space for free comments
The unmet need questions can be scored as individual items or as scores of unmet and total need, and/or strength of need.
Due to reported difficulty with the five point response format used by the CaSUN, this study has followed others in using a simplified four point response format [35]
Health status EQ5D-5 L [24] 5 questions addressing mobility, self-care, daily functional status, pain and/or discomfort, anxiety and/or depression; 5 point Likert scale; converts to single index value for calculation of quality-adjusted life years; utility estimates have been provided for cancer patients [36]. There is support for the scale’s reliability and validity when used with cancer patients [36]
Prostate cancer health related quality of life Expanded Prostate Cancer Index Composite Short Form (EPIC-26) [37] 26 questions in 5 domains of urinary incontinence; urinary irritative/obstructive; bowel; sexual; and hormonal; 4 and 5 item Likert scales; individual items are scored as a total on a 0–100 scale. Good internal consistency (Cronbach’s alpha ≥ 0.70 for each domain) and test-retest reliability (r ≥ 0.69 for each domain) [38].
General cancer related quality of life Functional Assessment of Cancer Therapy Scale - General (FACT-G) [39] 28 questions in 4 domains of physical wellbeing; social/family wellbeing; emotional wellbeing; functional wellbeing. 5 item Likert from ‘not at all’ to ‘very much’; provides domain scores and a total score. Reliability and validity have been shown to be high [39]
Psychological well being General Health Questionnaire (GHQ-12) [40] Measure of current mental health using 12 questions and 4 point Likert scale that provides an overall total score. The GHQ-12 has been extensively evaluated and shows good validity and reliability [41].
Activation to self-manage Patient Activation Measure (PAM®) [42] The short form comprises 13 questions answered on 5 point scale, from ‘disagree strongly’ to ‘agree strongly’ plus N/A; scores from a minimum of 10 responses into one of 4 levels of activation. The short form version has been shown to be reliable and valid [43]
Worry about cancer recurrence Adaptation of the Worry of Cancer Scale [44] 2 questions to measure frequency and degree of intrusiveness of worry about cancer recurrence; Likert scales of 0–10 and 0–4; calculates score of 0–20 No psychometric data for the modified version, but the original scale performed well [44]
Health behaviours - diet Adaptation of the Fruit and Vegetable Screening Measure for Adolescents [45] Rating fruit and vegetable consumption in a typical day, as two separate items; response adapted to include 5 or more portions, to be in line with current guidance The measure has shown to be reliable and valid [45]
Health behaviours – physical activity Leisure Time Exercise Questionnaire [46] Measure of leisure time physical activity as mild, moderate and strenuous activity, plus activity to work up a sweat as number of units of 15 plus minutes per week. A total score is calculated, which can be used to classify respondents as active, moderately active and insufficiently active [47] Reliability and validity of the measure has been shown [46]
The classification system has been validated or use with cancer survivors [48]
Health behaviours - smoking Developed for this study, drawing on measurement of these items in health promotion work. 1 question to measure current smoking behaviour  
Health behaviours - alcohol Developed for this study, drawing on measurement of these items in health promotion work. 1 question to record frequency of current alcohol consumption  
Outcome measures at T1 and T2
 Health service use Developed for this study, based on a previous evaluation at the University of Southampton [16] 15 questions about contact with health and community services for prostate cancer related issues and patient costs related to prostate cancer  
 Satisfaction with follow-up care Developed for a previous evaluation at the University of Southampton [16] 11 questions and space for free text comments regarding experience and acceptability of follow-up care  
Other variables
 Demographic characteristics Date of birth, ethnicity, marital status, level of education, employment status, housing status, caring responsibilities, computer use.