Can a tailored telephone intervention delivered by volunteers reduce the supportive care needs, anxiety and depression of people with colorectal cancer? A randomised controlled trial.

OBJECTIVE: The objective was to assess the effectiveness of a volunteer-delivered tailored telephone-based intervention in reducing prevalence of unmet supportive care needs, elevated levels of anxiety and depression among people with colorectal cancer over a 9-month period. METHODS: There were 653 participants who completed the baseline questionnaire and were randomised to usual care (n = 341) or intervention (n = 306). Three follow-up questionnaires were completed at 3-monthly intervals (response rates: 93%, 87%, 82%, respectively). All four questionnaires contained the Supportive Care Needs Survey (SCNS), Hospital Anxiety and Depression Scale (HADS) and checklists for colorectal cancer symptoms and use of support services. The intervention consisted of trained volunteers providing emotional support, service referral and information and was delivered after completion of each of the first three questionnaires. Primary outcomes were prevalence of moderate to high SCNS needs and elevated levels (scores of 8+) of HADS anxiety and depression. RESULTS: Over the study period, SCNS needs decreased similarly for both groups, and prevalence of elevated depression did not change for either group. There was a greater reduction in the prevalence of elevated anxiety in the intervention than usual care group (p < 0.01), with the intervention group decrease mainly occurring between baseline and the first follow-up survey (p < 0.01). However, the prevalence of elevated anxiety was similar between the two groups at each follow-up point. CONCLUSIONS: The intervention had no effect on supportive care needs or depression, although it may be associated with a greater reduction in anxiety. Future research should test the intervention with patients closer to diagnosis.

Systematic review of peer-support programs for people with cancer.

OBJECTIVE: To identify models of peer support for cancer patients and systematically review evidence of their effectiveness in improving psychosocial adjustment. METHODS: CINAHL (Cumulative Index to Nursing and Allied Health Literature), MEDLINE and PsychINFO databases were used to identify relevant literature published from 1980 to April 2007. Data on characteristics of the peer-support program, sample size, design, measures, and findings were extracted and papers were also rated with respect to research quality (categories 'poor', 'fair' or 'good'). RESULTS: Forty-three research papers that included data from at least 1 group were reviewed in detail, including 26 descriptive papers, 8 non-randomized comparative papers, and 10 papers reporting eight randomized controlled trials (RCTs). Five models of peer support were identified: one-on-one face-to-face, one-on-one telephone, group face-to-face, group telephone, and group Internet. CONCLUSION: Papers indicated a high level of satisfaction with peer-support programs; however, evidence for psychosocial benefit was mixed. PRACTICE IMPLICATIONS: One-on-one face-to-face and group Internet peer-support programs should be given priority when considering ways to offer peer support. Nevertheless, the other models discussed in this review should not be dismissed until further research is conducted with a wide range of cancer populations.

Implementing a telephone based peer support intervention for women with a BRCA1/2 mutation.

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.

Randomized controlled trial of a telephone-based peer-support program for women carrying a BRCA1 or BRCA2 mutation: impact on psychological distress.

PURPOSE: To assess the effectiveness of a telephone-based peer-delivered intervention in reducing distress among women with a BRCA1 or BRCA2 gene mutation. The intervention involved trained peer volunteers contacting women multiple times over a 4-month period to provide informational, emotional, and practical support. METHODS: Three hundred thirty-seven participants completed the baseline questionnaire, and those reporting interest in talking to other mutation carriers were randomly assigned to either the usual care group (UCG; n = 102) or the intervention group (IG; n = 105). Participants and researchers were not blinded to group allocation. Two follow-up questionnaires were completed, one at the end of the intervention (4 months after random assignment, time 2) and one 2 months later (time 3). Outcomes included breast cancer distress (primary outcome), unmet information needs, cognitive appraisals about mutation testing, and feelings of isolation. RESULTS: There was a greater decrease in breast cancer distress scores in the IG than UCG at time 2 (mean difference, -5.96; 95% CI, -9.80 to -2.12; P = .002) and time 3 (mean difference, -3.94; 95% CI, -7.70 to -0.17; P = .04). There was a greater reduction in unmet information needs in the IG than UCG (P < .01), with unmet needs being lower in the IG than UCG at time 2. There was a greater reduction in Cognitive Appraisals About Genetic Testing stress subscale scores in the IG than UCG (P = .02), with significantly lower scores among the IG than UCG at time 2 (P < .01). CONCLUSION: The intervention is effective in reducing distress and unmet information needs for this group of women. Identifying strategies for prolonging intervention effects is warranted.

Unmet support needs and distress among women with a BRCA1/2 mutation.

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.