Professionally led support groups for people living with advanced or metastatic cancer: a systematic scoping review of effectiveness and factors critical to implementation success within real-world healthcare and community settings.

PURPOSE: To examine the effectiveness of professionally led support groups for people with advanced or metastatic cancer, and identify factors critical to implementation success within real-world settings. METHODS: Databases (MEDLINE; PsychINFO; CINAHL) and grey literature were searched for empirical publications and evaluations. Articles were screened for eligibility and data systematically extracted, charted and summarised using a modified scoping review methodology. Implementation factors were mapped using Proctor's implementation framework and the Consolidated Framework for Implementation Research 2.0. RESULTS: A total of 1691 publications were identified; 19 were eligible for inclusion (8 randomised controlled trials, 7 qualitative studies, 2 cohort studies, 2 mixed methods studies). Most (n=18) studies focused on tumour-specific support groups. Evidence supported professionally led support groups in reducing mood disturbances (n=5), distress (i.e. traumatic stress, depression) (n=4) and pain (n=2). Other benefits included social connectedness (n=6), addressing existential distress (n=5), information and knowledge (n=6), empowerment and sense of control (n=2), relationships with families (n=2) and communication with health professionals (n=2). Thirteen studies identified factors predicting successful adoption, implementation or sustainment, including acceptability (n=12; 63%), feasibility (n=6; 32%) and appropriateness (n=1; 5%). Key determinants of successful implementation included group leaders' skills/experience, mode of operation, travelling distance, group composition and membership and resourcing. CONCLUSIONS: Professionally led tumour-specific support groups demonstrate effectiveness in reducing mood disturbances, distress and pain among patients. Successful implementation hinges on factors such as leadership expertise, operational methods and resource allocation. IMPLICATIONS FOR CANCER SURVIVORS: Professionally led support groups may fill an important gap in supportive care for people with advanced or metastatic cancer.

Scalp cooling: a qualitative study to assess the perceptions and experiences of Australian patients with breast cancer.

PURPOSE: Chemotherapy-induced hair loss is a common and distressing side effect. Scalp cooling is increasingly being used to reduce this hair loss. The purpose of this study was to explore patients' perceptions and experience of scalp cooling. METHODS: Seventeen Australian women with a diagnosis of breast cancer participated in a focus group (n = 4) or a semi-structured interview (n = 3). Both scalp-cooled and non-scalp-cooled participant views were sought. Participant perceptions and experiences of scalp cooling were discussed as part of patients' overall chemotherapy experience and a thematic analysis conducted. RESULTS: Five themes emerged from the data: (1) scalp cooling in the context of treatment decision-making discussions, (2) hair loss expectations vs. experiences, (3) treatment-related expectations vs. experiences, (4) the promise of faster regrowth and (5) satisfaction with scalp cooling and future scalp cooling decision-making considerations. Information during treatment decision-making was the primary factor that influenced whether patient expectations were met. Faster regrowth was a motivator to continue treatment. Efficacy and tolerability of scalp cooling influenced future hypothetical treatment decision-making for both scalp-cooled and non-scalp-cooled participants. CONCLUSIONS: This study provides the first in-depth exploration of patient attitudes to scalp cooling. The results highlight a need for accurate information regarding efficacy and tolerability as well as hair care information to assist patients with their treatment decision-making.

Effect of NCAM on aged-related deterioration in vision.

The neural cell adhesion molecule (NCAM) is involved in developmental processes and age-associated cognitive decline; however, little is known concerning the effects of NCAM in the visual system during aging. Using anatomical, electrophysiological, and behavioral assays, we analyzed age-related changes in visual function of NCAM deficient (-/-) and wild-type mice. Anatomical analyses indicated that aging NCAM -/- mice had fewer retinal ganglion cells, thinner retinas, and fewer photoreceptor cell layers than age-matched controls. Electroretinogram testing of retinal function in young adult NCAM -/- mice showed a 2-fold increase in a- and b-wave amplitude compared with wild-type mice, but the retinal activity dropped dramatically to control levels when the animals reached 10 months. In behavioral tasks, NCAM -/- mice had no visual pattern discrimination ability and showed premature loss of vision as they aged. Together, these findings demonstrate that NCAM plays significant roles in the adult visual system in establishing normal retinal anatomy, physiology and function, and in maintaining vision during aging.

A qualitative assessment of psychosocial impact, coping and adjustment in high-risk melanoma patients and caregivers.

The present study qualitatively assessed the psychosocial impacts experienced by stage III melanoma patients and caregivers throughout the course of the disease, and the coping responses they utilized in an attempt to promote psychosocial adjustment. The purpose of the study was to inform the development of a supportive care strategy for this population. Nineteen stage III melanoma patients and 14 of their caregivers were recruited from the clinical research database of the Melanoma Institute Australia. Data were collected using semistructured telephone interviews and analysed using thematic analysis. Participants reported psychosocial impacts related to diagnosis (shock, panic and devastation), treatment (challenges and unsatisfactory care, pain and limitation, practical impacts, new roles and responsibilities for the caregiver, caregiver inadequacy) and survivorship (ongoing physical problems, watchful waiting, feeling abandoned). They also reported global themes relevant to multiple phases of the disease (emotional distress, disfigurement, injustice, caregiver devaluation). Coping responses were identified related to diagnosis (avoidance), treatment (confidence in the treatment team, taking action) and survivorship (finding a positive meaning, acceptance and moving on) as well as global themes pertaining to multiple disease phases (receiving support, helpful thinking, putting on a brave face, redirecting attention, religion). The current findings support routine screening for the presence of symptoms and psychological distress and appropriate referral when necessary, and for provision of psychosocial interventions to provide information and support to stage III melanoma patients and caregivers. In addition, provision of communication skills training to all health professionals treating melanoma, use of evidence-based strategies for improving patient/caregiver understanding and recall, and routine assessment of patient-reported outcomes to inform clinical practice would be helpful.

Surgical skill and complication rates after bariatric surgery.

BACKGROUND: Clinical outcomes after many complex surgical procedures vary widely across hospitals and surgeons. Although it has been assumed that the proficiency of the operating surgeon is an important factor underlying such variation, empirical data are lacking on the relationships between technical skill and postoperative outcomes. METHODS: We conducted a study involving 20 bariatric surgeons in Michigan who participated in a statewide collaborative improvement program. Each surgeon submitted a single representative videotape of himself or herself performing a laparoscopic gastric bypass. Each videotape was rated in various domains of technical skill on a scale of 1 to 5 (with higher scores indicating more advanced skill) by at least 10 peer surgeons who were unaware of the identity of the operating surgeon. We then assessed relationships between these skill ratings and risk-adjusted complication rates, using data from a prospective, externally audited, clinical-outcomes registry involving 10,343 patients. RESULTS: Mean summary ratings of technical skill ranged from 2.6 to 4.8 across the 20 surgeons. The bottom quartile of surgical skill, as compared with the top quartile, was associated with higher complication rates (14.5% vs. 5.2%, P<0.001) and higher mortality (0.26% vs. 0.05%, P=0.01). The lowest quartile of skill was also associated with longer operations (137 minutes vs. 98 minutes, P<0.001) and higher rates of reoperation (3.4% vs. 1.6%, P=0.01) and readmission (6.3% vs. 2.7%) (P<0.001). CONCLUSIONS: The technical skill of practicing bariatric surgeons varied widely, and greater skill was associated with fewer postoperative complications and lower rates of reoperation, readmission, and visits to the emergency department. Although these findings are preliminary, they suggest that peer rating of operative skill may be an effective strategy for assessing a surgeon's proficiency.

Evolution of Tre-2/Bub2/Cdc16 (TBC) Rab GTPase-activating proteins.

Rab GTPases serve as major control elements in the coordination and definition of specific trafficking steps and intracellular compartments. Rab activity is modulated in part by GTPase-activating proteins (GAPs), and many RabGAPs share a Tre-2/Bub2/Cdc16 (TBC)-domain architecture, although the majority of TBC proteins are poorly characterized. We reconstruct the evolutionary history of the TBC family using ScrollSaw, a method for the phylogenetic analysis of pan-eukaryotic data sets, and find a sophisticated, ancient TBC complement of at least 10 members. Significantly, the TBC complement is nearly always smaller than the Rab cohort in any individual genome but also suggests Rab/TBC coevolution. Further, TBC-domain architecture has been well conserved in modern eukaryotes. The reconstruction also shows conservation of ancestral TBC subfamilies, continuing evolution of new TBCs, and frequent secondary losses. These patterns give additional insights into the sculpting of the endomembrane system.

Home visitation program effectiveness and the influence of community behavioral norms: a propensity score matched analysis of prenatal smoking cessation.

BACKGROUND: The influence of community context on the effectiveness of evidence-based maternal and child home visitation programs following implementation is poorly understood. This study compared prenatal smoking cessation between home visitation program recipients and local-area comparison women across 24 implementation sites within one state, while also estimating the independent effect of community smoking norms on smoking cessation behavior. METHODS: Retrospective cohort design using propensity score matching of Nurse-Family Partnership (NFP) clients and local-area matched comparison women who smoked cigarettes in the first trimester of pregnancy. Birth certificate data were used to classify smoking status. The main outcome measure was smoking cessation in the third trimester of pregnancy. Multivariable logistic regression analysis examined, over two time periods, the association of NFP exposure and the association of baseline county prenatal smoking rate on prenatal smoking cessation. RESULTS: The association of NFP participation and prenatal smoking cessation was stronger in a later implementation period (35.5% for NFP clients vs. 27.5% for comparison women, p < 0.001) than in an earlier implementation period (28.4% vs. 25.8%, p = 0.114). Cessation was also negatively associated with county prenatal smoking rate, controlling for NFP program effect, (OR = 0.84 per 5 percentage point change in county smoking rate, p = 0.002). CONCLUSIONS: Following a statewide implementation, program recipients of NFP demonstrated increased smoking cessation compared to comparison women, with a stronger program effect in later years. The significant association of county smoking rate with cessation suggests that community behavioral norms may present a challenge for evidence-based programs as models are translated into diverse communities.

The development of novel interventions to assist the leaders of cancer support groups.

PURPOSE: The literature on cancer support groups supports the provision of ongoing education and training for cancer support group leaders, with evidence suggesting that more skilled and experienced leaders create better outcomes for group members. To address support and training needs reported by leaders, three novel interventions were developed and pilot-tested. These included a leaders' website and discussion forum, DVD and manual, and a 2-day training workshop. METHODS: The interventions were developed using a combination of literature review, expert consensus, and consumer feedback. A convenience sample of ten leaders pilot-tested the Website and discussion forum. Using a mixed-method approach, evaluation of the workshop and the DVD and manual was conducted with 35 leaders. RESULTS: Overall, satisfaction with all aspects of the Website and discussion forum was high. Analysis of the quantitative data revealed extremely high satisfaction with the workshop and DVD and manual. The qualitative responses of workshop participants further supported the quantitative findings with enhanced knowledge, understanding, and confidence reported by leaders. CONCLUSIONS: All three interventions exhibited a high degree of user acceptance, regardless of the skill or experience of the cancer support group leader. The overall positive findings from the evaluation of the leader Website and discussion forum, the DVD and manual, and the workshop for cancer support group leaders provides evidence to support more rigorous evaluation of these resources in a randomized controlled trial.

Exploring consent to randomized placebo-controlled clinical trials in oncology.

AIMS: Randomized placebo-controlled trials are critical for advancing knowledge in oncology, yet little is known about optimal communication for informed consent. This study aimed to identify patient preferences for and satisfaction with three consultation styles (information-focused, emotion-focused and collaborative) in simulated discussions of four clinical trial concepts (randomization, placebo, tissue analysis and oncologists' recommendation). METHODS: In total 75 Australian cancer patients and carers, or both, viewed videotaped simulated consultations with a doctor and patient discussing a randomized, placebo-controlled trial. Their satisfaction and preferences for both consultation style and information were assessed. The patients' characteristics and decision-making preferences were also evaluated as potential predictors for consultation style preference. RESULTS: Participants preferred a collaborative consultation style when discussing randomization (74.6%), placebo (71.4%) and oncologist's recommendation (77%). However an emotion-focused consultation style was preferred when discussing tissue analysis (81%). The participants represented a highly information-seeking group, although most favoured collaborative or passive roles in treatment decision-making. Limited variables were identified that predict consultation style preference. CONCLUSION: While supporting the value of a collaborative approach to clinical trial communications, the study finding that tissue analysis requires a more emotion-focused approach highlights a new focus for trial communication and confirms the need for doctors to remain flexible in their consultation style.

Effect of surgical techniques on clinical outcomes after laparoscopic gastric bypass--results from the Michigan Bariatric Surgery Collaborative.

BACKGROUND: The techniques used with laparoscopic gastric bypass (LGB) and their association with patient outcomes remain largely unexplored. METHODS: We analyzed the data from the Michigan Bariatric Surgery Collaborative, which maintains a state-wide prospective clinical registry of bariatric surgery patients. Participating surgeons were surveyed regarding their use of specific techniques during LGB. The survey data were linked with the registry data from patients undergoing LGB from June 2006 to January 2010. The gastrojejunostomy technique and the use of staple-line reinforcement were evaluated for their effects on patient outcomes. RESULTS: During the study period, 9904 patients underwent LGB. A total of 44 surgeons (86%) completed the survey. When performing gastrojejunostomy, most surgeons used a circular stapler (CS) technique (66%), followed by the hand-sewn (HS) (18%) and linear stapler (LS) (16%). Also, 48% of surgeons reported using staple-line buttressing when creating the gastric pouch. The rate of anastomotic leak at the gastrojejunostomy was not affected by the surgical technique (CS .6%, LS .3%, HS .6%, P = .38). However, the CS technique was associated with a greater rate of postoperative hemorrhage (CS 2.9%, LS 1.2%, HS 1.6%, P <.0001) and wound infection (CS 4.7%, LS 1.6%, HS .6%, P <.0001). The use of staple-line reinforcement was associated with a lower rate of postoperative hemorrhage (1.9% versus 2.7%, P = .012). CONCLUSION: With LGB, the use of the CS technique was associated with greater rates of postoperative hemorrhage and wound infection than the use of the LS or HS technique. Furthermore, the use of staple-line reinforcement was associated with a reduction in the rates of postoperative hemorrhage.