To assess the effectiveness of a purpose-built information-based website to reduce distress among young women with breast cancer. A total of 337 participants (Intervention Group [IG] n = 202; Usual Care Group [UCG] n = 177) returned the completed baseline questionnaires (T1). Details regarding accessing the website were provided to IG participants. Follow-up questionnaires were completed: (a) 3 months (T2) and (b) 6 months after baseline (T3). Outcomes included anxiety and depression (primary outcomes), quality of life (QoL) and unmet information needs. About 70% of the IG accessed the website, typically only once (median: 1, range 1-15), spending a median of 19 min (range: 1-315) on the site. Mean levels of anxiety and depression did not differ between the two groups at T1, T2 or T3. While improvement in total QoL was greater in the IG than UCG between T1 and T2, QoL scores did not differ between groups at T3. The number of unmet needs did not differ between the two groups at T3. The intervention was not effective in reducing anxiety, or depression in this group of women. As a high number of unmet needs were identified, other strategies for addressing these needs of young women with breast cancer are needed.
Distress levels among female BRCA1/2 mutation carriers can be similar to levels found among breast cancer patients. While psychological distress has been associated with unmet needs among cancer patients no study has examined this among BRCA1/2 mutation carriers. The objectives of this study were to: (1) describe the unmet support needs of women with a known BRCA1/2 mutation, (2) determine how unmet needs are related to psychological distress, and (3) identify variables that predict level of unmet need and distress. Female BRCA1/2 mutation carriers were identified through Familial Cancer Centers in 3 Australian states. Two-hundred and seventy-nine participants completed surveys assessing need for help on 16 information and support items. The Impact of Events Scale assessed genetic test related distress. Participants reported an average of 5.4 (SD = 4.9) moderate to very high unmet needs. Twenty-one percent had scores indicating moderate distress, and 13 % indicating severe distress. Younger age (t = -3.34; p < 0.01), not having someone to confide in about the gene mutation (t = 2.57; p = 0.01) and shorter time since notification of mutation status (t = -2.49; p = 0.01) were associated with higher unmet need scores in linear regression analyses. Greater number of unmet needs was associated with a greater likelihood of moderate to severe levels of distress (OR = 1.19; p < 0.01) in logistic regression analyses. Identifying appropriate interventions that target unmet needs among younger women and those with no confidante may help to reduce distress. Interventions that provide an opportunity for women to confide in someone, such as Peer support programs, may be one way of meeting the emotional needs of this population.
This study provides insight into the effect of migration on the determinants of obesity among Iranian immigrants in Victoria, Australia, and offers a contrast with the existing evidence by considering the experience of a group that is generally well educated, often emigrates for reasons related to personal freedom as opposed to material deprivation, and has rates of obesity similar to high-income countries.
The intervention is effective in reducing distress and unmet information needs for this group of women. Identifying strategies for prolonging intervention effects is warranted.
Women with a BRCA1/2 gene mutation face complex risk management decisions and communication issues that can lead to increased levels of distress and unmet needs. We describe the implementation of a peer-support program that aims to reduce distress among women with a BRCA1/2 mutation, including peer and support recipient satisfaction with the program, challenges and lessons learnt. Participants with a BRCA1/2 mutation were matched with a trained peer volunteer (also a mutation carrier) to have regular one-on-one phone calls, over 4 months. Details of the calls, including topics discussed, time spent and number, were collected. Peers and recipients completed surveys assessing how they felt the contact went, satisfaction with the program, and preferences for matching. Satisfaction with the program was high for both peers and recipients. 80% of pairs ended contact through mutual agreement. Peers and recipients differed in the importance placed on age and surgery experience to determine matches. The most challenging aspect of the program for peers was difficulty in contacting recipients. Peer support for women with a BRCA1/2 mutation is feasible. However, to encourage continued involvement by peers and recipients greater flexibility in the method and delivery of contact is needed. We advocate the use of text-messaging and/or email as mechanisms for pairs to arrange and maintain contact. These strategies should be in addition to, rather than replacing, calls. A mixed medium intervention, where recipients can tailor the method of communication to suit their needs, may be preferable and effective, though this would need to be tested.
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