Background
Overview
Ethics statement
Eligibility criteria
Scale development: methods and results
Study 1: item generation
Study 2: item reduction and scale construction
Initial evaluation and validation: study 3
Methods
Population and procedure
Measures
Data analysis
Content validity
Acceptability and precision
Exploratory factor analysis
Internal consistency
Criterion and convergent validity
Test–retest reliability
Sensitivity to change
Results
Participants
N = 135 | PRRS (Mean ± SD) | Univariate P | |
---|---|---|---|
Cancer type | |||
Breast | 37 (27.5%) | 36.00 ± 14.38 | 0.060 |
Gynaecological | 35 (26%) | 40.07 ± 12.54 | |
Lung | 33 (24.5%) | 37.36 ± 11.28 | |
Melanoma | 30 (22%) | 44.13 ± 12.71 | |
Time since diagnosis | |||
<1 year | 40 (30%) | 36.61 ± 12.44 | 0.329 |
1–2 years | 21 (15%) | 40.48 ± 15.22 | |
>2 years | 74 (55%) | 40.23 ± 12.69 | |
On treatment (missing N = 22) | |||
Yes | 76 (67%) | 40.16 ± 12.74 | 0.445 |
No | 37 (33%) | 38.14 ± 13.99 | |
Age group | 0.003 Post hoc comparison (Bonferroni) old vs young p = .003 | ||
≤ 50 | 34 (25%) | 34.54 ± 11.73 | |
51–65 | 55 (41%) | 38.03 ± 12.68 | |
≥ 66 | 46 (34%) | 44.03 ± 13.07 | |
Sex | |||
Female | 104 (77%) | 38.25 ± 13.52 | 0.121 |
Male | 31 (23%) | 42.39 ± 10.90 | |
Relationship status | |||
Partner | 105 (78%) | 39.39 ± 13.03 | 0.754 |
No partner | 30 (22%) | 38.53 ± 13.28 | |
Employment status | |||
Retired | 70 (52%) | 42.60 ± 12.52 | 0.001 Bonferroni retired v not employed p = .001 |
Employed/self employed | 38 (28%) | 38.26 ± 12.37 | |
Not in paid employment | 27 (20%) | 31.69 ± 12.33 | |
Gave up work due to illness | |||
Yes | 53 (39%) | 32.34 ± 10.76 | < 0.0001 |
No | 82 (61%) | 43.63 ± 12.51 | |
Education (missing N = 2) | |||
Secondary | 51 (38%) | 40.91 ± 13.71 | 0.236 |
Further | 17 (13%) | 35.59 ± 10.48 | |
University | 32 (24%) | 35.78 ± 12.55 | |
Professional qualifications | 33 (25%) | 41.52 ± 13.46 | |
Caregiving responsibilities | |||
Yes | 88 (65%) | 37.74 ± 12.79 | 0.076 |
No | 47 (35%) | 41.92 ± 13.21 | |
Caregiving responsibilities (for children/grandchildren only) | 0.413 | ||
Yes | 40 (30%) | 37.78 ± 14.03 | |
No | 95 (70%) | 39.79 ± 12.63 |
Acceptability of PRRS
PRRS core items
Precision and item reduction
Exploratory factor analysis
Item | Factor 1 | Factor 2 | Factor 3 | |
---|---|---|---|---|
PL1 | My illness interferes with performing my responsibilities at home (e.g. cooking, cleaning, gardening, DIY) | − 0.790 | ||
PL3 | I am less able to fulfil my caregiving responsibilities (e.g. looking after children, grandchildren, another adult, pets) | − 0.892 | ||
PL4 | I have less patience for my caregiving responsibilities (e.g. looking after children, grandchildren, another adult, pets) | − 0.674 | ||
PL5 | I feel sad that my illness forces me to miss out on doing things with my children and/or other family members | − 0.681 | ||
PL6 | I worry about the impact of my illness on my partner (or the person who is my main support) | 0.803 | ||
PL7 | I worry about the impact of my illness on my children and/or other family members | 0.801 | ||
PL8 | I worry about the impact of my illness on people that I normally provide support to (e.g. friends, neighbours, parents and/or grandchildren) | 0.774 | ||
PL9 | The way I see myself within the family has changed because of my illness | 0.433 | − 0.428 | |
PL11 | I worry how my family will cope in the future | 0.872 | ||
PL13 | I socialise less because of my illness | − 0.653 | ||
FT3 | I worry about the financial problems I will have in the future as a result of my illness or treatment | 0.561 | ||
FT11 | I feel in control of my financial situation | 0.500 | ||
PF3 | My family gives up things because of the financial impact of my illness | 0.618 | ||
PF4 | My family have to help me financially | 0.798 | ||
PF5 | The additional costs of my illness are more than I thought they would be (e.g. travel and parking, heating, healthy eating, supplements, non-prescription medication, paying for help at home) | 0.686 | ||
PF6 | I have difficulty meeting the additional costs of my illness | 0.874 |
Subscale | Mean (SD) Range | Inter-item correlation range | Correlations between subscale scores | ||
---|---|---|---|---|---|
Family well-being | Responsibilities and social life | Financial well-being | |||
Family well-being (5 items, possible score 0–20) | 8.38 (5.57) 0–20 | 0.479–0.670
N = 132 | 1.00 | ||
Responsibilities and social life (5 items, possible score 0–20) | 12.85 (5.12) 0–20 | 0.324–0.665
N = 133 | 0.563
N = 135 | 1.00 | |
Financial well-being (6 items, possible score 0–24) | 17.97 (5.01) 5–24 | 0.211–0.610
N = 135 | 0.544
N = 135 | 0.493
N = 135 | 1.00 |
Internal consistency
Criterion and convergent validity
Test–retest reliability
Sensitivity to change
I am content with the quality of my life right now |
N
| Baseline PRRS mean (SD) | Mean PRRS change (SD) |
p
| Effect sizea |
---|---|---|---|---|---|
Improved by one point or more | 31 | 39.21 (13.87) | − 3.88 (7.58) | 0.008 | − 0.28 |
Unchanged | 56 | 39.52 (13.67) | − 0.12 (6.72) | 0.891 | − 0.01 |
Worsened by one point or more | 31 | 40.58 (12.10) | 4.55 (6.79) | 0.001 | 0.38 |
PRRS jobs and career subscale
Item | Missing data (%) | Mean ± SD | Median/mode | |z-score skew| | % floor (score 0) | % ceiling (score 4) | |
---|---|---|---|---|---|---|---|
PE2 | I have reduced my working hours because of my illnessa | 0 | 2.06 ± 1.66 | 3.0/0 | 0.57 | 33.3 | 24.2 |
PE3 | My working hours are flexible to accommodate my treatment and appointments | 0 | 3.00 ± 1.44 | 4.0/4 | 2.97 | 12.1 | 57.6 |
PE4 | I feel I am able to do my job as well as I would like | 0 | 2.30 ± 1.45 | 3.0/3 | 1.39 | 21.2 | 21.2 |
PE5 | I worry that my illness will impact my employment in the future (including return to work)a | 0 | 1.64 ± 1.34 | 2.0/2 | 0.76 | 27.3 | 12.1 |
FT9 | I am concerned about keeping my job and incomea | 0 | 1.79 ± 1.52 | 2.0/0 | 0.38 | 30.3 | 18.2 |
PE6 | I feel that my illness has limited my careera opportunities | 0 | 2.48 ± 1.77 | 3.0/4 | 1.43 | 30.3 | 48.5 |
PE7 | I feel supported by my employer | 6.06 | 3.39 ± 1.12 | 4.0/4 | 4.21 | 3.2 | 71.0 |