Increased risk of cardiovascular and renal disease, and diabetes for all women diagnosed with gestational diabetes mellitus in New Zealand-A national retrospective cohort study.

BACKGROUND: Gestational diabetes mellitus increases the risk of developing type 2 diabetes. The aim of this study is to compare cardiometabolic and renal outcomes for all women in New Zealand with gestational diabetes (2001-2010) with women without diabetes, 10-20 years following delivery. METHODS: A retrospective cohort study, utilizing a national dataset providing information for all women who gave birth between 1 January 2001 and 31 December 2010 (n = 604 398). Adolescent girls <15 years, women ≥50 years and women with prepregnancy diabetes were excluded. In total 11 459 women were diagnosed with gestational diabetes and 11 447 were matched (for age and year of delivery) with 57 235 unexposed (control) women. A national hospital dataset was used to compare primary outcomes until 31 May 2021. RESULTS: After controlling for ethnicity, women with gestational diabetes were significantly more likely than control women to develop diabetes-adjusted hazard ratio (HR) 20.06 and 95% confidence interval (CI) 18.46-21.79; a first cardiovascular event 2.19 (1.86-2.58); renal disease 6.34 (5.35-7.51) and all-cause mortality 1.55 (1.31-1.83), all p values <.0001. The HR and 95% CI remained similar after controlling for significant covariates: diabetes 18.89 (17.36-20.56), cardiovascular events 1.79 (1.52-2.12), renal disease 5.42 (4.55-6.45), and all-cause mortality 1.44 (1.21-1.70). When time-dependent diabetes was added to the model, significance remained for cardiovascular events 1.33 (1.10-1.61), p = .003 and renal disease 2.33 (1.88-2.88), p < .0001 but not all-cause mortality. CONCLUSIONS: Women diagnosed with gestational diabetes have an increased risk of adverse cardiometabolic and renal outcomes. Findings highlight the importance of follow-up screening for diabetes, cardiovascular risk factors, and renal disease.

Trends in the primary healthcare nursing workforce in managing diabetes from two sample surveys in 2006-2008 and 2016 in Auckland, New Zealand.

AIM: To examine trends in the primary healthcare nursing workforce and their community management of diabetes. METHOD: Two representative surveys were carried out in 2006-2008 and 2016 among all primary healthcare nurses in Auckland. Nurses were randomly selected, and 26% (n=287) and 24% (n=336) completed a self-administered questionnaire and telephone survey. Biographical information, knowledge of diabetes, how valued nurses felt and diabetes care for patients was provided. RESULTS: Between surveys, numbers of practice nurses have significantly increased, and specialist nurse numbers decreased, while district nurse numbers remained the same. In 2016, practice nurses were younger, more ethnically diverse, more likely to undertake education and had increased knowledge of diabetes and diabetes-related complications (including stroke) compared to nurses in 2006-2008. More nurses consulted patients, conducted foot examinations, addressed serum glucose, medication management, tobacco use and followed up care independently of doctors. In 2016, only 37% of nurses felt sufficiently knowledgeable to discuss medications with patients, <20% could state that hypertension, smoking and dyslipidaemia were major risk factors for complications, and less nurses felt valued. CONCLUSION: Practice nurses have increased their capacity in diabetes management following global trends and require more support in meeting the complex healthcare needs of people with diabetes.

Associations between symptoms with healthcare utilization and death in advanced cancer patients.

INTRODUCTION: There is limited data about assessments that are associated with increased utilization of medical services among advanced oncology patients (AOPs). We aimed to identify factors related to healthcare utilization and death in AOP. METHODS: AOPs at a comprehensive cancer center were enrolled in a Center for Medicare and Medicaid Innovation program. Participants completed the Edmonton Symptom Assessment Scale (ESAS) and the Functional Assessment of Cancer Therapy-General (FACT-G) scale. We examined factors associated with palliative care (PC), acute care (AC), emergency room (ER), hospital admissions (HA), and death. RESULTS: In all, 817 AOPs were included in these analyses with a median age of 69. They were generally female (58.7%), white (61.4%), stage IV (51.6%), and represented common cancers (31.5% GI, 25.2% thoracic, 14.3% gynecologic). ESAS pain, anxiety, and total score were related to more PC visits (B=0.31, 95% CI [0.21, 0.40], p<0.001; B=0.24 [0.12, 0.36], p<0.001; and B=0.038 [0.02, 0.06], p=0.001, respectively). Total FACT-G score and physical subscale were related to total PC visits (B=-0.021 [-0.037, -0.006], p=0.008 and B=-0.181 [-0.246, -0.117], p<0.001, respectively). Lower FACT-G social subscale scores were related to more ER visits (B=-0.03 [-0.53, -0.004], p=0.024), while increased tiredness was associated with fewer AC visits (B=-0.039 [-0.073, -0.006], p=0.023). Higher total ESAS scores were related to death within 30 days (OR=0.87 [0.76, 0.98], p=0.027). CONCLUSIONS: The ESAS and FACT-G assessments were linked to PC and AC visits and death. These assessments may be useful for identifying AOPs that would benefit from routine PC.

The Need for Specialized Oncology Training for Clinical Ethicists.

Numerous ethical issues are raised in cancer treatment and research. Informed consent is challenging due to complex treatment modalities and prognostic uncertainty. Busy oncology clinics limit the ability of oncologists to spend time reinforcing patient understanding and facilitating end-of-life planning. Despite these issues and the ethics consultations they generate, clinical ethicists receive little if any focused education about cancer and its treatment. As the field of clinical ethics develops standards for training, we argue that a basic knowledge of cancer should be included and offer an example of what cancer ethics training components might look like. We further suggest some specific steps to increase collaboration between clinical ethicists and oncology providers in the outpatient setting to facilitate informed consent and proactively identify ethical issues.

Nurse's contribution to the diabetes annual review and funded programmes in Auckland, New Zealand.

AIMS: Examine trends in nurse's contribution to diabetes funded programmes,estimate total nurse consultations, and document the division of diabetes care between doctors and nurses in general practice. METHODS: All primary health care nurses in Auckland were identified in 2006-8 and 2016 and 26% and 24% were randomly surveyed, achieving response rates of 86%and 73%, respectively. Participants completed a self-administered and telephone questionnaire detailing their contribution to diabetes funded programmes. RESULTS: In response to more people with diabetes, significantly more nurses in 2016 consulted patients, provided follow-up care, completed Diabetes Annual Reviews independently of doctors (48%), accessed more educational resources (including theinternet) and 63% felt supported, compared with 27% and 55% of nurses respectively,in 2006-8. The main reason nurses surveyed did not participate in diabetes reviews was because designated nurses conducted them, with more reporting this in 2016 (55%) compared to 32% in 2006-8. Most nurses in the 2016 survey addressed cardiovascular risk such as blood pressure, smoking cessation, physical activity and nutrition during the review. CONCLUSIONS: Nurses conducted more diabetes consultations and reviews, addressed cardiovascular risk in 2016 and reported increased support for participating in diabetes reviews within general practice, compared with nurses in 2006-8.

Examining the Association between Emotional Dysregulation and Treatment Burden.

Treatment burden contributes to suboptimal adherence and lower health-related quality of life among people diagnosed with chronic conditions, but little is known about how the psychological process of emotional dysregulation influences treatment burden. To explore this relationship, we conducted a descriptive, cross-sectional study comprised of 149 men and women diagnosed with one or more Centers for Medicare and Medicaid Systems defined chronic conditions recruited from a single primary care setting. Multivariate analyses demonstrated emotional dysregulation as an independent factor contributing to total (p < .001), medication (p = .007), and dietary (p < .001) treatment burden, with model effect sizes ranging from large (.43) to moderate (.21), controlling for other known antecedent factors of treatment burden. Emotional dysregulation was not a factor contributing to exercise related treatment burden. Our findings indicated emotional dysregulation as an important factor contributing to higher levels of total, medication, and dietary treatment burden associated with daily self-management regimens.

Quality and cost outcomes of an integrated supportive care program.

PURPOSE: This article reports findings from a demonstration project funded by the Center for Medicare and Medicaid Innovation (CMMI). The purpose of the project was to test a supportive care program on the outcomes of quality of care and quality of life, and costs in patients with advanced cancer. METHODS: The project was conducted between February 2015 and February 2018, enrolling adult, Medicare or Medicaid beneficiaries with advanced or progressed solid tumor malignancy. A comparative longitudinal comparison of the program with both a concurrent control and an historic control was used to evaluate outcomes. The intervention included routine electronic biopsychosocial screening, early access to specialty palliative care, and nurse care coordination. Quality of life, aggressiveness of care, and healthcare utilization were measured. RESULTS: A total of 1340 people were enrolled, with 71% of the total sample being Caucasian; 41.4% had stage IV cancer, and 20% utilized Medicaid only. Significant differences in the enrolled patients and the comparison group were controlled for through statistical analysis. There were significantly fewer ED visits, unplanned admissions, and fewer total hospitalization days in the intervention group. In the last 30 days of life, hospital and ICU admissions were less and a greater proportion of patients were enrolled in hospice in the intervention group. Quality of life had a marked improvement for enrolled patients. Average cost per member per month was not less in the enrolled group. CONCLUSION: This pragmatic demonstration project confirmed the clinical benefits of an integration of supportive care for patients with advanced cancer, although no reduction in costs was found.

Possible Bioenergetic Biomarker for Chronic Cancer-Related Fatigue.

BACKGROUND: Cancer-related fatigue (CRF) is a highly prevalent, debilitating, and persistent symptom experienced by patients receiving cancer treatments. Up to 71% of men with prostate cancer receiving radiation therapy experience acute and persistent CRF. There is neither an effective therapy nor a diagnostic biomarker for CRF. This pilot study aimed to discover potential biomarkers associated with chronic CRF in men with prostate cancer receiving radiation therapy. METHODS: We used a longitudinal repeated-measures research design. Twenty men with prostate cancer undergoing radiation therapy completed all study visits. CRF was evaluated by a well-established and validated questionnaire, the Patient-Reported Outcomes Measurement Information System for Fatigue (PROMIS-F) Short Form. In addition, peripheral blood mononuclear cells were harvested to quantify ribonucleic acid (RNA) gene expression of mitochondria-related genes. Data were collected before, during, on completion, and 24 months postradiation therapy and analyzed using paired t-tests and repeated-measures analysis of variance. RESULTS: The mean of the PROMIS-F T score was significantly increased over time in patients with prostate cancer, remaining elevated at 24 months postradiation therapy compared to baseline. A significant downregulated BC1 ubiquinol-cytochrome c reductase synthesis-like (BCS1L) was observed over time during radiation therapy and at 24 months postradiation therapy. An increased PROMIS-F score was trended with downregulated BCS1L in patients 24 months after completing radiation therapy. DISCUSSION: This is the first evidence to describe altered messenger RNA for BCS1L in chronic CRF using the PROMIS-F measure with men receiving radiation therapy for prostate cancer. CONCLUSION: Our results suggest that peripheral blood mononuclear cell messenger RNA for BCS1L is a potential biomarker and therapeutic target for radiation therapy-induced chronic CRF in this clinical population.

Building family caregiver skills using a simulation-based intervention for care of patients with cancer: protocol for a randomized controlled trial.

BACKGROUND: Family caregivers of patients with cancer undergoing radiation therapy experience significant distress and challenges related to high symptom burden and complex care demands. This is particularly true for caregivers of patients with head and neck, esophageal, anal, rectal, and lung cancers, who are often receiving combined-modality treatment and may have tracheostomy tubes, gastrostomy tubes, or colostomies/ileostomies. This study aims to evaluate a simulation-based nursing intervention to provide information, support, and training to caregivers during radiation therapy. METHODS: This randomized controlled trial will include a sample of 180 patients and their family caregivers. Caregivers assigned to the control group will receive usual care and an informational booklet from the National Cancer Institute (NCI). Those in the intervention group will receive usual care, the NCI booklet, and three meetings with a nurse interventionist during radiation treatment followed by a booster call two weeks posttreatment. Intervention sessions focus on themes consistent with the trajectory of radiation therapy: the patient experience/needs, the caregiver experience and dyad communication, and transition to survivorship. Outcomes are measured at baseline, end of treatment (T2), and 4 (T3) and 20 (T4) weeks posttreatment, with the primary outcome being caregiver anxiety at T4. DISCUSSION: This trial is innovative in its use of simulation in a psychoeducational intervention for family caregivers. The intervention is administered at point-of-care and aimed at feasibility for integration into clinical practice. Patient quality of life and healthcare utilization measures will assess how providing support and training to the caregiver may impact patient outcomes. TRIAL REGISTRATION: The trial was registered on 08/14/2019 at ClinicalTrials.gov (identifier NCT04055948 ).

Randomized trial of a web-based nurse education intervention to increase discussion of clinical trials.

BACKGROUND: Clinical trials are a critical source of evidence for oncology care, yet very few patients participate. Among healthcare providers, nurses spend the most time with cancer patients and are the most highly trusted professionals. We developed and evaluated an educational program for oncology nurses targeting knowledge, attitudes, self-efficacy and perceived norms to facilitate discussion about clinical trials and support patient decision making. METHODS: A nationwide sample of oncology nurses were randomly assigned to receive general clinical trials education delivered as text (attention control) vs. tailored video vignettes (intervention) in a web-based continuing education program. Participants completed a baseline assessment and follow up assessments immediately after the educational program and three months later. The primary outcome was intention to discuss clinical trials with patients. Secondary outcomes were knowledge and attitudes about clinical trials, self-efficacy, and perceived norms. RESULTS: 1393 nurses enrolled and completed the educational program and post-intervention assessment (720 control, 673 video). Both text education and tailored video education increased intention to discuss clinical trials with patients, with a greater effect in the video group (p < .0001). Likewise, knowledge, attitudes, perceived behavioral control, and perceived norms were all improved with education in both groups, and the magnitude of benefit was greater (p < .001) for the video group in all outcomes except knowledge. CONCLUSION: A one-time online educational program for oncology nurses improves knowledge, attitudes, self-efficacy and intention to engage patients in discussions about clinical trials. A tailored video format was associated with a greater effect than standard text only material.

Trends in diabetes care and education by primary health care nurses in Auckland, New Zealand.

AIMS: To examine trends in the management of patients with diabetes by primary health care nurses, its association with diabetes education and how valued and supported nurses feel in Auckland, New Zealand. METHODS: Two representative cross-sectional surveys of all nurses providing community-based care, and patients with diabetes they consult, were conducted in 2006-8 and 2016. All participants completed a self-administered questionnaire on biographical details and a telephone interview on their provision of diabetes care. RESULTS: Significantly more nurses discussed serum glucose and medications with patients, planned follow-up and scheduled practice nurse appointments in 2016 compared with 2006-8, and fewer specialist diabetologist appointments were made (12% versus 2%). Fewer nurses in 2016 than in 2006-8 felt valued (62% versus 75%) and supported (78% versus 89%) when managing patients (p-values = 0.0004). Nurses diabetes education was associated with recommended practice and feeling valued. Significantly more patients were prescribed metformin (81%) and insulin (46%) in 2016 compared with 58% and 30% in 2006-8. Despite this, HbA1c levels remained unchanged. CONCLUSIONS: Prescribed glycaemic-related medications increased, and more nurses engaged with patients about glycaemic control and medications in 2016 compared with 2006-8. Nurses undertaking diabetes education was strongly associated with best management practices and nurses feeling valued.

A randomized controlled trial of structured palliative care versus standard supportive care for patients enrolled in phase 1 clinical trials.

PURPOSE: Patients enrolled in Phase 1 clinical trials have typically exhausted standard therapies and often are choosing between a clinical trial and hospice care. Significant symptom burden can result in early trial discontinuation and confound trial outcomes. This study aimed to examine differences in study duration, symptom burden, adverse events (AE), and quality of life (QOL) between those receiving structured palliative care versus usual supportive care. PATIENTS AND METHODS: Sixty-eight patients enrolled in phase 1 clinical trials and 39 of their CGs were randomly assigned to receive structured palliative care or usual supportive care. Patient QOL was measured monthly using the Functional Assessment of Cancer Therapy and Memorial Symptom Assessment Scale. The Quality of Life in Life-Threatening Illness-Family Care Version and Caregiver Reaction Assessment were used for CGs. AEs and use of palliative care resources were compared between arms. RESULTS: Mean duration of the phase 1 study was 142 days in the palliative care arm versus 116 days in the usual care arm (p = 0.55). Although not statistically significant, patients in the palliative care arm experienced fewer AEs and better QOL, as did their CGs, compared to those receiving usual care. CONCLUSIONS: Phase 1 patients and their CGs have physical and psychosocial needs warranting palliative care services. Results suggest that structured palliative care is associated with the increased duration of the study and improved patient and CG QOL.

A survey of cancer patients, caregivers, and providers regarding familiarity, importance, and utilization of supportive and integrative oncology services.

PURPOSE: Supportive and integrative oncology services aim to improve the quality of life of cancer patients. This study characterizes the views of these services among cancer patients, caregivers, and providers at a comprehensive cancer center. METHODS: A cross-sectional survey was administered in 2017-2018. The survey asked about participants' familiarity, perceived importance, use, accessibility, and barriers to 19 supportive and integrative oncology services using a Likert scale. Data were analyzed using the Kruskal-Wallis test and a proportional odds regression model. RESULTS: A total of 976 surveys were obtained (604 patient surveys, 199 caregiver surveys, 173 provider surveys). Patients were mostly female (56.3%), ≥60 years old (59.4%), and Caucasian (66%). Providers were an even distribution of nurses, physicians, and advanced practice providers. Patients felt social work and nutrition services were the most familiar (36.4% and 34.8%) and the most important (46.3% and 54.5%). Caregivers were also most familiar with those two services, but felt that nutrition and learning resources were most important. Social work and nutrition were easiest to access and used the most by both patients and providers. There was a positive correlation between accessibility and perceived importance. Being unaware was the most common barrier identified by patients (38.4%), providers (67.1%), and caregivers (33.7%). CONCLUSION: Social work and nutrition services were most familiar to respondents, and also generally the most important, accessible, and utilized. Lack of awareness was the most common barrier cited and suggests that increased efforts to educate patients and providers about other services available are needed.

Interest and Willingness to Pay for Integrative Therapies of Patients With Cancer and Caregivers.

PURPOSE: Complementary and integrative medicine (CIM) services are more prevalent in cancer centers but continue to be underutilized by patients. This study examines perspectives from patients and caregivers about these services being offered at a comprehensive cancer center. METHODS: Patients and caregivers were surveyed about their familiarity, interest, and experience with five CIM therapies: acupuncture, massage, meditation, music therapy, and yoga. Respondents were asked about their interest in and/or paying for these services at baseline, when recommended by their medical team, and when offered in a clinical trial. Respondents were also asked about perceived barriers to accessing these services. Chi-squared tests were performed to explore associations between past experience, interest levels, and willingness to pay. RESULTS: A total of 576 surveys were obtained (464 patients and 112 caregivers). Most respondents identified as White or Caucasian (65.6%), female (57.2%), had been a patient for < 3 years (74.2%), had some college education (73.8%), and made > $40,000 in US dollars as their annual household income (69.1%). Respondents were most familiar with therapeutic massage (34.2%) and least familiar with acupuncture (20.0%). The average interest in these services increased from 53.3% to 64.1% when recommended by a medical professional. Respondents were most willing to pay $1-60 for therapeutic massage (62.3%) and least willing to pay for meditation (43.7%). The main barriers to accessing CIM services were cost (56.0%) and lack of knowledge (52.1%). CONCLUSION: Overall, a significant proportion of patients and caregivers were unfamiliar with these five integrative therapies. Increasing education, decreasing cost, and a recommendation by medical professionals would improve CIM usage.

Improved foot management of people with diabetes by primary healthcare nurses in Auckland, New Zealand.

AIMS: Evaluate trends in foot examinations for people with diabetes by primary healthcare nurses between 2006-2008 and 2016 in Auckland, New Zealand. METHODS: All primary care nurses in 2006-2008 and 2016 were identified and 26% and 24% were randomly sampled and surveyed, respectively. Nurse participants completed a self-administered questionnaire and telephone interview about the care provided for people with diabetes. RESULTS: Significantly more patients consulted by practice nurses received foot examinations in 2016 (58%) compared with 2006-2008 (36%), and foot-care education (66% versus 26%). Of the 43% of patients who had no foot examination in 2016, 23% had no previous examination documented. Significantly more nurses in 2016 than in 2006-2008 self-reported routinely examining patients' feet (45% versus 31%) and giving foot-care education (28% versus 13%). These practices were associated with nurses undertaking >5 hours of diabetes education within the past five years. CONCLUSIONS: Practice nurses have significantly expanded their role in managing people with diabetes over the last decade by increasing the number of foot examinations and providing recommended foot-care education. Improved management was associated with nurses attending diabetes education in the past five years. Gaps were identified in conducting the recommended number of foot examinations, categorising patients' risk of foot disease and recording previous examinations.

Associations between symptom severity and treatment burden in people living with HIV.

AIM: To examine the association between symptoms severity and treatment burden in people living with HIV. DESIGN: Correlational, secondary analysis of data from participants diagnosed with HIV enrolled in a descriptive, cross-sectional study examining physical activity patterns. METHODS: We analysed data from 103 men and women using self-report data collected between March 2016 - February 2017. Our primary statistical analyses consisted of explanatory multivariate modelling with individual PROMIS-29 scores representing symptom severity and treatment burden measured using the Treatment Burden Questionnaire-13. RESULTS: Greater symptom severity was associated with higher levels of cumulative treatment burden as well as higher levels of task-specific medication and physical activity burden. Multivariate regression analyses revealed that fatigue was a risk factor of cumulative treatment burden as well as task-specific medication and physical activity treatment burden. Effect sizes of multivariate models ranged from small (0.11) to medium (0.16). Additionally, post hoc analyses showed strong correlations between fatigue and other measured symptoms. CONCLUSION: Findings support extant treatment burden literature, including the importance of addressing symptom severity in conjunction with treatment burden screening in the clinical setting. Results also suggest clinical interventions focused on the reduction of fatigue could reduce treatment burden in people living with HIV. Strong correlations between fatigue and other symptoms indicate the potential for reducing fatigue by addressing other highly clustered symptoms, such as depression. IMPACT: People living with HIV exhibiting higher levels of fatigue are at high risk for treatment burden and poorer self-management adherence. Clinicians should consider incorporating symptom and treatment burden assessments when developing, tailoring and modifying interventions to improve self-management of HIV and other co-morbid conditions.

Treatment burden as a predictor of self-management adherence within the primary care population.

PURPOSE: We aimed to (1) describe the amount of treatment burden experienced in the primary care population diagnosed with chronic conditions and (2) examine if cumulative and task-specific treatment burden were predictors of medication, exercise, and dietary adherence in patients diagnosed with chronic conditions. DESIGN: We conducted a prospective, descriptive, cross-sectional study. METHODS: We enrolled 149 men and women from a single primary care clinic. Participants completed self-report surveys with data collected between September 2019 and December 2019. Our primary statistical analyses consisted of multivariate regression modeling. RESULTS: The sample experience a moderate amount of treatment burden (M = 38.22; SD = 31.83). We found strong, negative correlations between both cumulative and task-specific burden in relation to medication, exercise, and dietary adherence (p < .001). Significant multivariate models (p < .001), controlling for sample demographics, demonstrated cumulative treatment burden predicted medication adherence, whereas task-specific burden predicted medication, exercise, and dietary adherence outcomes, with model effect sizes ranging from moderate (0.20) to large (0.54). CONCLUSIONS: Results demonstrate higher levels of cumulative and task-specific treatment burden predict medication, exercise, and dietary adherence within a sample diagnosed with various chronic conditions. These findings indicate the potential for using treatment burden screening in the clinical setting to identify individuals at risk for poor self-management adherence. Treatment burden screening also enables the provider to determine areas of high burden affecting self-management adherence in order to design an effective treatment plan using targeted interventions, resources, or education to reduce patient burden in order to improve adherence.

Genetic Variation Near chrXq22-q23 Is Linked to Emotional Functioning in Cystic Fibrosis.

INTRODUCTION: Cystic fibrosis (CF) is an autosomal recessive disease that affects many organ systems, most notably the pulmonary and gastrointestinal systems. Through genome-wide association studies, multiple genetic regions modifying CF-related pulmonary and gastrointestinal symptoms have been identified, but translation of these findings to clinical benefit remains elusive. Symptom variation in CF patients has been associated with changes in health-related quality of life (HRQOL), but the relationship between CF symptom-modifying genetic loci and HRQOL has not been explored. The purpose of this study was to determine whether two previously identified genetic modifiers of CF-related pathology also modify the subscales of HRQOL. METHODS: HRQOL and genotype data were obtained and analyzed. Linear regressions were used to examine the amount of variance in HRQOL subscales that could be explained by genotype for each modifier locus. RESULTS: A significant regression equation was found between genotype for rs5952223, a variant near chrXq22-q23, and emotional functioning in a sample of 129 CF patients. DISCUSSION: These data suggest that genotype for this single-nucleotide polymorphism is associated with emotional functioning in CF patients and highlight this genetic region as a potential therapeutic target, irrespective of CF transmembrane conductance regulator genotype.

Exploration of Decisional Control Preferences in Adolescents and Young Adults with Cancer and Other Complex Medical Conditions.

Purpose: Adolescent and young adults (AYA) with cancer encounter many medical treatment decisions but may have variable desires for involvement in decision-making. This study describes the degree of decisional control AYA patients preferred in complex medical decisions. Methods: A cross-sectional descriptive correlational design evaluated experienced AYA patients' decision-making role preferences using the Control Preference Scale and explored relationships in a proposed model of decision control. Results: Overall, most patients preferred an "active collaborative" role (39%), where the patient prefers to make the final decision with input from the provider, or a "shared decision-making" role (34%), wherein the decision is jointly made between patient and provider. Oncology AYA patients tended to prefer a more passive role than nononcology AYA patients. Time since diagnosis also positively correlated with control preference, with patients preferring a more active level of decisional control as the number of days from diagnosis increased. While no other statistically significant relationships were found between factors put forth in the exploratory model and decision control, there were strong associations between the factors themselves that warrant future study. Conclusion: The findings advance the knowledge of AYA preferences for decision-making involvement, enhancing our ability to identify patients at risk for low health care engagement and explore the consequences of limited or impaired decisional capacity. Future research might examine interventions to promote self-management skills and patient decisional role preferences, fulfilling the need to respect both the desire for decision-making involvement of some patients and the preference to defer to the expertise of providers for others.