In some areas, women’s experiences improved between Time One and Time Two, and in others they worsened. The mean number of high unmet needs (out of 59 possible items) for all respondents decreased from one month to three months post-diagnosis from 8.3 to 7.7 items. As the number of high unmet needs changed for respondents, so did the most prevalent items and domains.
5.4.2.1. Unmet Needs with the Greatest Changes of Prevalence
Changes to individual high unmet need items are likely to reflect both changing needs and the care received from the RBN and others. The change represents either an improved or worsened journey for women.
Changes in high unmet needs items which reflected a worsening experience for respondents from one month to three months post-diagnosis are listed in Table 9. Six unmet need items had >8% increase in prevalence. The items demonstrating increases in high unmet needs were dominated by the Physical and Daily Living domain with ‘nausea and/or vomiting’ presenting with the greatest increase in prevalence (+16%). These high unmet needs are around how people are feeling
148 (e.g. tired), sleeping, and working. One item from within the Psychological domain presented as a worsening experience for women as well, namely ‘accepting changes in your appearance’ (+9%). These results are consistent with the sample’s medical characteristics reflecting more women having undertaken chemotherapy and other cancer treatments which often result in these physical challenges.
Table 9: Items with the greatest increase in high unmet needs from one month (T1) to three months (T2) post-diagnosis (i.e. women’s experiences worsened in these areas)
Changes in unmet needs items which reflected an improved experience for women from one month to three months post-diagnosis are listed in Table 10. Eight items decreased in prevalence by >8%. Of these unmet needs, six items were from the Psychological domain, and two from the Health System and Information domain. These unmet needs revolved around women’s worries, fears and uncertainty, as well as about being informed. The item demonstrating the greatest improvement for respondents was ‘concerns about the worries of those closest to you’ (-19%). These results suggest women’s concerns have lessened or been resolved, possibly due to the clarification of their health status (e.g. remission and/or successful surgical results), and/or due to the supportive care they received.
149
Table 10: Items with the greatest decrease in high unmet needs from one month (T1) to three months (T2) post-diagnosis (i.e. women’s experiences improved in these areas)
A full table listing the prevalence of high unmet needs for all items at time one and time two is included at Appendix 10.
5.4.2.2. Changes in Most Prevalent Items
The most prevalent high unmet needs compared across time points are presented in this section. Greater than or equal to 20% of respondents reported high unmet needs at one month and three months post-diagnosis on 12 and 14 items
respectively. The items reported by over 20% of respondents at either survey collection period are reported in Table 11. Only items from the Psychological, Health System and Information, and Physical and Daily Living domains were reported by over 20% of respondents at either time point. All of these high unmet need items from the Psychological and Health System and Information domains decreased in prevalence at three months post-diagnosis as compared to one month post-diagnosis. Conversely, all of the Physical and Daily Living unmet needs
150 specific high unmet needs items discussed in the last section in the general areas of improved and worsened experiences for women24.
Table 11: Items reported by >20% of respondents as high unmet needs at one month (T1) and/or three months post-diagnosis (T2)
5.4.2.3. Changes in Most Prevalent Domains
Changes in the mean domain unmet needs illuminate the ‘big picture’ shifts in challenging issues for respondents. Analyses of needs patterns over time were restricted to respondents who submitted surveys at both one month and three
24
The only exception being ‘accepting changes to your appearance’ (from the Psychological domain) which was reported by <20% of respondents but rounded up.
151 months post-diagnosis (n=63). The data was assessed to be normally distributed for the psychological domain, but skewed for the other domains and overall. In this section, the domain changes in unmet needs are presented quantitatively in mean unmet needs by domains, discussed, and displayed visually.
Overall, high unmet needs demonstrated a trend towards a decrease over time which did not reach statistical significance (p=.057). The mean number of high unmet needs at one month post-diagnosis was 8.03, and 6.02 at three months post- diagnosis. When analysing differences in mean domain unmet needs, it is
important to remember that each domain did not contain the same number of need items, ranging from 3 to 22 items. Thus direct comparison between domains is inappropriate. Mean unmet needs overall and within domains at both survey points are given in Table 12 including the values indicating the level of statistical certainty.
Table 12: Mean moderate to high unmet needs at one month (T1) and three months (T2) post-diagnosis by domains (n=63)
a. T-test for paired samples (parametric)
b. Wilcoxon Signed Ranks Test for related samples (non-parametric) c. Chi squared (non-parametric)
Unmet needs in the Psychological and Health System and Information domains decreased statistically significantly (p=.025 and p=.012 respectively) from one month to three months post-diagnosis. Whereas, during the same time, the
152 Sexuality domain demonstrated a small but statistically significant (p=.000) increase in unmet needs. Physical and Daily Living unmet needs increased, but did not reach statistical significance (p=.163).
Identification of these domain changes strengthens the findings for items of
greatest change, and changes to most prevalent unmet need items, and also further clarifies the picture of women’s experiences. The worsening experiences for
women around sexuality issues is an important finding. Moreover, the statistically significant changes to domain unmet needs strengthens the certainty of the picture of women’s experiences.