Table 1 Outcome measures

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

 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

 Demographic characteristics

Date of birth, ethnicity, marital status, level of education, employment status, housing status, caring responsibilities, computer use.